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Knowing but not knowing: the experience of parents who knew about their baby’s heart defect before their… Rempel, Gwendolyn R. 1993

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KNOWING BUT NOT KNOWING: THE EXPERIENCE OF PARENTS WHO KNEW ABOUT THEIR BABY'S HEART DEFECT BEFORE THEIR BABY WAS BORN by GWENDOLYN RUTH REMPEL B.Sc.N., University of British Columbia, 1983 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE IN NURSING in THE FACULTY OF GRADUATE STUDIES The School of Nursing We accept this thesis as conforming to the required standard  THE UNIVERSITY OF BRITISH COLUMBIA April 1993 © Gwendolyn Ruth Rempel, 1993  In presenting this thesis in partial fulfilment of the requirements for an advanced degree at the University of British Columbia, I agree that the Library shall make it freely available for reference and study. I further agree that permission for extensive copying of this thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. It is understood that copying or publication of this thesis for financial gain shall not be allowed without my written permission.  (Signature)  Department of School of Nursing The University of British Columbia Vancouver, Canada  Date April 23, 1993  DE-6 (2/88)  ii  Abstract This study was designed to discover and describe the experience of parents who knew about their baby's congenital heart defect (CHD) antenatally. With advances in obstetrical ultrasound and fetal echocardiography, more parents are learning of their baby's congenital anomaly before their baby is born. Little is known, however, about the experience of the parents who receive information about their baby's CHD antenatally. Review of the literature and consideration of Kleinman's (1978) cultural system model revealed that the literature pertaining to antenatal diagnosis represents the perspectives of those in the professional sector. The experience of antenatal diagnosis of CHD from the parents' perspective has not been studied. Their explanatory models are essential if we are to plan and provide nursing care for this growing population. The qualitative method of phenomenology was employed to elicit the parents' explanatory model - to answer the question, What is the experience of parents of children with congenital heart defects who knew about their baby's congenital heart defect antenatally? Data collection occurred through in-depth interviews with 16 mothers and fathers of eight children whose CHD was diagnosed antenatally. Through a process of ongoing data collection and simultaneous data analysis the experience of these parents was constructed. Subsequent interviews were used to validate emergent themes.  111 The parents' experience of knowing about their baby's heart defect antenatally seemed to best be understood and explained through the description of three phases. The first phase, Suspicion to Diagnosis, began when suspicion was raised regarding their baby's heart through an obstetrical ultrasound. The second phase, Diagnosis to Delivery, began when the presence of the suspected heart defect was confirmed by a fetal echocardiogram. The third phase, Birth to Relief, was when the baby was born and parents discovered what the heart defect meant for their child. Concepts central to understanding the experience are uncertainty, grieving and maternal tasks of pregnancy. The meaning of these concepts to parents' experience of antenatal diagnosis is examined. The implications for nursing are many. The study findings clearly emphasize nursing has an important role in providing support, education, and anticipatory guidance for parents as they face the uncertainties of their pregnancy and their baby's birth knowing, but not knowing about their baby's congenital heart defect.  iv Table of Contents Abstract ^  ii  Table of Contents ^  iv  List of Figures ^  vii  Acknowledgements ^  viii  CHAPTER 1: INTRODUCTION Background and Conceptualization of the Problem ^1 Problem Statement ^5 Purpose of the Study ^6 Research Question ^7 Definition of Terms ^7 Introduction to the Method ^7 Significance of the Study ^8 Assumptions ^9 Limitations of the Study ^9 Summary ^10 CHAPTER 2: REVIEW OF SELECTED LITERATURE Introduction The Birth of a Baby with a Congenital Anomaly Antenatal Detection of Congenital Anomalies Antenatal Detection of Congenital Heart Defects . . . Synthesis of Current Knowledge  ^12 ^12 ^18 ^22 ^23  CHAPTER 3: METHODS Introduction Sample Selection and Selection Criteria Participant Recruitment  ^24 ^24 ^22  V Description of the Participants Data Collection Procedures Data Analysis Trustworthiness Criteria Procedures for Protection of Human Rights Summary ^  ^25 ^27 ^30 ^31 ^36 37  CHAPTER 4: PRESENTATION AND DISCUSSION OF FINDINGS Introduction  ^39  Phase One Waiting for the "Brick Wall": Suspicion to Diagnosis Suspicion Raised ^41 Waiting ^44 The Fetal Echocardiogram ^47 Suspicion Confirmed ^50 The Parents' Responses ^52 "I was shocked" ^52 "Maybe it was my fault" ^53 "I couldn't stop crying" ^55 "I was so mad" ^57 ^59 "We might lose him" Upside down world ^60 "You don't know what it all means" ^61 Phase Two "Picking up the Pieces": Diagnosis to Delivery The Parents' Responses ^66 "I was hoping...that it would be perfect" .^66 "But what's going to happen?" ^71 "Kick, kick, kick" ^72 "Scared to grow too attached" ^73 "We prepared ourselves for the worst" .^74 "Think positive" ^75 ^76 "Praying that he'll be okay" "Asking a million, zillion questions" . . .^76 "We broke it to everybody" ^ 77 Putting things into perspective ^ 79  vi Phase Three "He Cried": Birth to Relief The Labour "I thought about the baby" "I didn't think about the baby once" The Birth "He cried" "He's going to be okay" "Scoop and run"  ^80 ^80 ^84 ^85 ^86 ^88 ^90  Analysis of Central Concepts Uncertainty Appraisal of Uncertainty Grief Maternal Tasks of Pregnancy The Overall Experience Summary ^  ^91 ^95 ^100 ^103 ^111 114  CHAPTER 5: CONCLUSIONS AND IMPLICATIONS Introduction Conclusions Implications Practice Implication Education Implications Research Implications Summary ^ References  ^115 ^117 ^119 ^120 ^123 ^124 126 ^128  Appendices Appendix A - Permission for Initial Contact ^133 Appendix B - Participant Consent Letter ^135 Appendix C - Trigger Questions ^138 ^140 Appendix D - Demographics Appendix E - Ethical Approval ^143 Appendix F - The Experience ^146  vii List of Figures Figure 1:^Health care system: internal structure  ^4  viii Acknowledgements I would like to thank the parents who so vividly shared with me their experience of knowing about their baby's heart problem before their baby was born. Your babies' hearts received much attention from early on and I will always remember how you as parents prepared for the worst and yet deep down hoped for the best, and got your beautiful crying "prizes" in the end. I wish to thank Dr. George Sandor for welcoming me into the world of antenatal diagnosis. It is an ongoing privilege to work with you. Thank you as well to my thesis committee members, Judy Lynam (Chairperson), Elaine Carty and Betty Davies for your invaluable feedback, guidance and care. You have challenged me and inspired me. I am grateful for the grant I received from the Sheena Davidson Nursing Research Fund. Thanks to Milda Kazlauskas of the Research Unit for taking care of the money and to Sue Humphries for typing. Finally, I would like to express appreciation to my family, friends and colleagues. Your encouragement, optimism and understanding enabled me to endure the tough moments and enjoy the many satisfying moments of the thesis process.  1  CHAPTER 1 Introduction  Background and Conceptualization of the Problem The birth of a baby represents in many instances a joyous and long anticipated event. Parents have fantasized about their child and have dreamed and hoped about their future with their new baby. When a baby is born with a congenital anomaly parents experience a significant loss. Solnit and Stark (1961) in their seminal work, described this experience as the "sudden loss of the baby that was expected; and the sudden birth of a feared, threatening, and anger-evoking child" (p. 525). They found that mothers' mourning reactions were similar to what was observed in those who had experienced the death of a child. The main difference between the two experiences was "the persistent effect on the mother of the living defective child who realistically requires care and attention" (p. 533). Parents whose baby is born with a congenital anomaly must grieve the loss of their hoped for child while at the same time become involved with their received child. Parents often lack the time and energy to work through their grief as they are caught up in the whirl of medical activities surrounding their baby. They are immediately faced with investigations and history gathering, the confirmed diagnosis, and then the barrage of information regarding the diagnosis, treatment plans and options, and anticipated outcomes. Although assimilating  2  this information is difficult (Fost, 1981, p. 321), parents are expected to make decisions on behalf of their baby regarding treatment, as well as learning how to care for their child with his or her special needs. Congenital heart defects (CHD) account for the largest number of major congenital anomalies (Carlson, 1991). The incidence of CHD is eight per 1000 (Carson, Bricker, & McNamara, 1990) and many of these defects are detected within the first days of the baby's life. Suddenly, parents are faced with the devastating news that their perfect looking newborn has a life threatening anomaly. The baby often requires immediate specialized assessment and intervention and is transferred to the nearest tertiary hospital. Despite physical and emotional exhaustion related to the labor and delivery, most parents accompany or follow their baby to the pediatric center and the reality of this unexpected event unfolds before them. With advances in obstetrical ultrasonography and fetal echocardiography many complex heart defects are being detected antenatally (Crawford, Chita, & Allan, 1988). In British Columbia, fetal echocardiography has been available since 1979, with over 1500 scans having been performed. In 1990 and 1991, approximately 300 scans were done each year with cardiac malformations being detected in 40-50 fetuses per year (Sandor, 1992). An increasing number of parents are learning of their baby's CHD during pregnancy. What is the experience of these parents who receive news of their baby's heart defect antenatally?  3  One report of a fetal echocardiography program indicates that as well as evaluating the risk factors for delivery and making the necessary arrangements ahead of time, they "also carefully prepared the future parents in providing them with detailed information" (Oberhaensli, Extermann, Friedli, & Beguin, 1989, p. 98). They conclude that fetal echocardiography is beneficial for the planning, timing and location of the delivery, and that the antenatal diagnosis "allows in addition the psychological preparation of the future parents" (p. 99). Aspects of this "psychological preparation" are discussed in literature regarding antenatal detection of congenital anomalies. Clark and DeVore (1989) state that it is easier from "a psychological standpoint for parents to receive the news of an anomalous fetus in the calm, supportive atmosphere of a doctor's office than to be suddenly confronted with an abnormal child after months of waiting and many hours of painful labor" (p. 1036). They also claim that the antenatal diagnosis allows parents time to prepare themselves emotionally, physically, and financially for the birth of their baby with a congenital anomaly, as well time to "attempt to answer, according to their own particular social or religious framework and with appropriate counselors, all the questions of why" (p. 1036). Lorenz and Kuhn (1989) state that "when a fetal diagnosis is established remote from delivery, the additional burden of prolonged anticipation and uncertainty combined with the lack of opportunity to directly bond with a visible child requires the full support of the  4  medical team and the extended family" (p. 263). They recommend a multidisciplinary team counseling approach. These observations reflect efforts to effectively provide care for parents who know about their baby's congenital anomaly antenatally, but they are based on the experiences and perceptions of health care professionals. There is no literature regarding the parents' perceptions or interpretations of the experience of knowing about their baby's congenital anomaly or, more specifically, their baby's heart defect antenatally. According to Kleinman (1978), the parents' perspective must be elicited and understood in order for health care providers to be effective in caring for them. Kleinman's cultural system model describes health care systems in terms of three social arenas within  Professional sector  Points of interaction, entrance and exit  Popular sector: (a) Individual - based (b) Family - based (c) Social nexus - based (d) Community - based  Beliefs Choices and decisions Roles Relationships Interaction settings Institutions  Boundary lines Folk sector Points of interaction, entrance and exit  Health Care System  Figure 1. Health care system: internal structure Adapted from "Concepts and a Model for the Comparison of Medical Systems as Cultural Systems", by A. Kleinman, 1978, Social Science and Medicine,  R, p. 86.  5  which sickness is experienced and reacted to: (1) the popular sector which "comprises principally the family context of sickness and care, but also includes social network and community activities, (2) the professional sector, and (3) the folk sector, which includes nonprofessional healing specialists" (p. 86). Within each sector is the context in which the individual understands and experiences specific illness episodes. Kleinman refers to the "notions" or "informal descriptions of what an illness is about" as explanatory models (Kleinman, 1988, p. 120). Health care relationships are conceptualized as transactions between different explanatory models. "Not infrequently, explanatory models conflict. When they do ... these conflicts impede health care" (Kleinman, 1978, p. 88). Communication regarding explanatory models between those in the popular sector and those in the professional sector is essential. The explanatory model of parents who know about their baby's heart defect antenatally has not been elicited. Problem Statement The birth of a baby with a congenital anomaly is a devastating experience for parents. The unexpected news of their baby's condition is experienced as a loss, but the opportunity to grieve the loss of the hoped for baby is often overshadowed by the immediate demands of the baby, the barrage of information to absorb and the decisions to be made.  6  Increasingly, congenital anomalies are being diagnosed antenatally, including congenital heart defects, which account for the largest number of major congenital malformations. Little is known about the parents' experience of knowing about their baby's heart defect antenatally. Health care professionals note that antenatal diagnosis allows the baby to be born near a tertiary center and comment both on the long anxious wait that the parents experience as well as on the "psychological" issues that can be addressed by the parents during this time. There is no literature, theoretical or empirical, however, that addresses the perspective of these parents. With further advances in fetal echocardiography and antenatal screening, the implications of this paucity will become more evident as health care professionals, including nurses, will be faced with growing numbers of these parents needing care. Purpose of the Study The purpose of this study is to discover and describe the experience of parents of children with CHD who knew of their baby's heart defect antenatally, so that health care professionals, including nurses, will be better able to plan and provide care for these parents from the time of the diagnosis until the birth of the baby, as well as during the time that follows the baby's birth.  7  Research Question The question directing this study is: What is the experience of parents of children with congenital heart defects who knew about their baby's congenital heart defect antenatally? Definition of Terms Experience. "An event regarded as affecting one" (Allen, 1990, p. 411). Parents. The biological mother of the baby whose heart defect is detected antenatally, and her partner. Congenital heart defect. "A structural defect of the heart or great vessels or both, present at birth. Any number of defects may occur singly or in combination. They result from improper development of the heart and blood vessels during the prenatal period" (Miller & Keane, 1983, p. 260). Antenatal diagnosis. Diagnosis is made before the birth of the baby using ultrasound technology. Introduction to the Method The conceptualization of the problem in terms of the need to elicit the explanatory model of parents who have experienced the antenatal diagnosis of CHD, and the resulting research question directs the researcher to the naturalistic design of phenomenology. "Phenomenology is the study of human experience from the actors'  8  particular perspective" (Knaack, 1984, p. 107). The goal of this qualitative research method is to discover and understand the lived experience of the individual from his or her vantage point. Phenomenology therefore will be used to discover and describe the lived experience of the parents who knew about their baby's heart problem antenatally. Significance of the Study Scientific significance  This study is significant in that there is minimal research related to the parents' experience of knowing of their baby's congenital heart defect before the baby is born. Neither is there research related to the experience of parents who know antenatally about other congenital anomalies. This study is necessary to begin to fill this gap and has the potential of drawing attention to the need to discover the experience of parent populations who know about their children's congenital anomaly antenatally. Practical significance  Only with the parents' perspectives on their experience of knowing about their baby's congenital heart defect antenatally will nurses be able to plan and provide appropriate care. This knowledge will also be useful in educating nurses about caring for these parents, as well as providing useful information for the other health care professionals that are involved with these parents.  9  Assumptions This study is based on the assumption that the parents' experience of finding out about their baby's heart problem before the baby is born is a meaningful experience for them and that they can communicate this meaning. This is based on the "assumption of the phenomenologist ... that people do act as self-observers and do pay attention to themselves in terms of their activities and experience" (Knaack, 1984, p. 111). Limitations of the Study Financial and time constraints potentially prevented the researcher from eliciting the participation in the study of parents who lived outside a four hour commuting range. One such family was able to participate in the study because their baby remained in hospital for an extended period of time and so the first interview was done during this time. A second interview was also possible, despite their geographical location, as they were willing to participate in an interview when they returned for a follow-up appointment with their cardiologist several weeks after their baby was discharged from the hospital. Through acquired grant money two four hour trips were possible. As this was a graduate level thesis, the sample size at the outset of the study was restricted to six to eight participants (i.e., the parents of six to eight children), therefore limiting the possibility that a point of  10  data "saturation" would be reached. In fact, as will be described in Chapter Three, many aspects of the parents' experience were brought to a point of data saturation in the interviews with the first six couples and then were further validated in interview with the seventh and eighth couple. It would seem that a sample size of eight couples allowed for data saturation. Summary The diagnosis of congenital heart defects antenatally is becoming more common as obstetrical ultrasound and fetal echocardiography technology advances. As this new population of parents who know about their baby's heart problem during the pregnancy is emerging it is evident that their needs for care must be addressed. This chapter has presented the background and conceptualization of the problem, indicating the lack of literature, theoretical or empirical, addressing the parents' perspective of the experience of antenatal diagnosis of congenital heart defects. The purpose of the study was stated, as was the research question. A brief introduction to the research method was provided, as well as statements regarding the significance of the study, and the assumptions and limitations inherent in the study. The following chapter will provide a critical review of the relevant literature. Chapter Three will present a detailed account of the research method employed to address the research question. In Chapter Four the findings of the study will be presented and discussed  11  in relation to pertinent concepts in the literature. The final chapter will include the conclusions of the study and the implications for nursing practice and education, as well as for further research.  12  CHAPTER 2 Review of Selected Literature  Introduction A review of the relevant literature is necessary to situate the problem of this study in the context of what is known and what is not known about the experience of parents who learn of their baby's heart problem antenatally. In this chapter, a critical review of three bodies of literature will provide a strong argument as to why it is important to discover and describe the experience of parents who know about their baby's CHD during pregnancy.  The Birth of a Baby With a Congenital Anomaly Solnit and Stark (1961) were the first to describe the experience of having an imperfect baby. They likened the experience of having a baby with a congenital anomaly to that of experiencing the death of a child. They described the mother's mourning reaction to the loss of the healthy child and acknowledged that "there is no time for working through the loss of the desired child before there is the demand to invest the new and handicapped child as a love object" (p. 526). Mothers of "retarded children" were studied, but it is unclear whether the mothers themselves were interviewed -- "the material on which this study is based has been collected from pediatric, psychiatric, and casework contacts with mothers and their defective children" (p. 524).  13  The strength of this work is that it repeatedly emphasizes that those caring for families of children with congenital anomalies must be aware of and understand the grief reaction of the mothers. This study is limited in that the methods are unclear, fathers are not included, and the population is limited to "retarded" children. D'Arcy (1968) interviewed 694 mothers in "an attempt to find out from mothers how, when, and from whom they first learned about their babies' defects, and to get their opinions" (p. 796). Congenital heart disease and spina bifida accounted for the majority of the congenital anomalies diagnosed. Most of the CHD diagnoses occurred within the first few months of the baby's life. The mothers described four areas of common concerns: the need for a sympathetic and understanding approach by the medical and nursing staff, particularly at the time the baby is born, the importance of the use of simple language in explanations of the baby's problems, the mothers' need to ask questions, and the desire for truth, "avoiding unjustifiable pessimism and unrealistic optimism" (p. 798). This study reflects an attempt to learn of the mother's perspective and contains many direct quotes from the mothers to reinforce the author's conclusions. Unfortunately, the value of this information is minimized by the following comment: It is appreciated that the mothers' recollection of what they were told at the time their babies were born was not necessarily reliable, and that the personality of each mother determined to some  14  extent her satisfaction or dissatisfaction with the way in which she was treated at the time of her baby's birth (p. 798). The final comment stating it is "essential to ensure as far as possible that she understands what the doctor is saying" (p. 798) reflects the belief that parents must understand things from the health professional's perspective. Although this study attempted to elicit the explanatory model of mothers, the value of this perspective was not recognized. Drotar, Baskiewicz, Irvin, Kennel, and Klaus (1975) interviewed 20 mothers and five fathers of 20 children with a wide range of malformations including "mongolism", CHD, and cleft palate. The purpose of the study was to determine the course of parental reactions to the birth of a child with a congenital malformation and the process of parental attachment. Analysis of the interviews demonstrated five stages of parental reactions: shock; denial; sadness, anger, and anxiety; adaptation; and reorganization. The authors provided illustrative quotes from the parents as they presented these stages and recommended early crisis counseling in the first months after the birth to facilitate parental attachment and adjustment. The strength of this study is that it includes the perspectives of mothers and fathers. Its major weakness is that the research method does not reflect the purpose of the study which was to determine the "course" of parental reactions and the "process" of parental attachment. Single interviews are not sufficient to determine a course or process. As well, the  15  interviews were structured and employed leading questions. For example, they asked parents specifically about attachment-- "Does it seem like the baby is yours?" and "When did you start to feel close to the baby?" There are specific questions about feeling "blue", "angry", "irritable" and one of the final questions is: "To review, could you tell me again what stages you remember going through since the baby was born?" (p. 712). It is not surprising that the authors were able to come up with stages despite the methodology, but the findings may not be valid. Mercer (1974) studied mothers' responses to their infants with congenital defects by observing five mothers who had given birth to babies with visible anomalies: Apert's syndrome, a third naris, "mongolism", absence of fingers from right hand and cleft lip. Using nondirective interviewing and direct observation in thirteen contacts with each mother and baby over the first three months of the baby's life, Mercer assessed the mothers' behaviors in terms of maternal assessments, maternal contact behaviours, and maternal care activities. Mercer found that mothers demonstrated more attachment behaviours than aversion behaviours during the first week of their baby's life (79.4 per cent as compared to 20.6 per cent) and that these proportions changed very little over the three-month observation period. The study is limited in that all observations were recorded after the interviews and although the investigator asked to visit during the baby's feeding time, "mothers frequently chose a time when the baby  16  was napping to permit more opportunity for 'visiting' " (p. 135). Consequently, the investigator did not observe interactions between the baby and mother. This study is noteworthy however, in that the investigator employed a variety of data collection methods, including the provision of direct care for mothers and babies while they were in hospital as a way of observing maternal behaviours. This study represents pioneering nursing research of parental response to the birth of a baby with a congenital anomaly. Similarly, Waechter (1977) sought to discover factors involved in parental responses to the birth of an imperfect child. Fifty parents of children born with various physical anomalies were interviewed as soon as possible after the birth of their child, usually within the first several days, "as one facet of the initial care planning. Follow-up interviews were conducted at three-month intervals in an outpatient clinic for handicapped children" (p. 300). The method related to data collection and analysis is not specified and although the findings are presented anecdotally with no overall conceptualization of the experience or discussion of the "bonding problems" referred to in the title of the article, this study again, represents an attempt the elucidate the devastating experience of having a defective baby. The remaining literature pertinent to parents' experience of having a baby with a congenital anomaly is not research based. Jackson (1985) attempts to convey the experience of parents "when the baby isn't perfect" by relating her personal experience. She recounts the  17  birth of her second child Robert, who was born with hydrocephalus, from her dual perspective as a mother and a pediatric nurse who had described the concept of chronic grief prior to her son's birth (1974). Lynch (1989) discusses parental reactions to the birth of a infant with a congenital defect in terms of parental expectations, identity, attachment, crisis, grief, and decision making. She refers to pertinent literature and makes recommendations for nurses working in neonatal intensive care settings. She emphasizes the vulnerability of parents of a child with a congenital defect and the critical role for bedside nurses in setting "the stage for either prolonged positive or negative feelings about health care institutions and caregivers" (p. 57). The parents' need for consistent comprehensive information and continual communication with the health care team is stressed. Benkendorf (1987), a genetic counselor, discusses the common responses of parents to the birth of an abnormal child. The loss for the parents is emphasized and Drotar et al.'s five stages of grieving are used to discuss her observations and recommendations. The strength of the article is the emphasis on what can be done for the families whose babies are in the Neonatal Intensive Care Unit, but again the recommendations are based on the authors' experience with these parents, not on the experience of the parents. Although some of the studies related the diagnosis of congenital anomalies have included CHD (e.g., Drotar et al., 1975), the specific experience of parents whose baby is diagnosed with CHD during the  18  neonatal period has not been studied. Several authors describe various aspects of the experience of parents of children with CHD (Glaser, Harrison, & Lynn, 1964; Linde, Rasof, Dunn, & Rabb, 1966; Kupst, Blatterbauer, Westman, Schulman, & Paul, 1977), but only one study addresses the parents' experience regarding the diagnosis itself. Garson, Benson, Ivler, and Patton (1978), through "informal discussions with 260 families of children with CHD at all stages from initial diagnosis through surgical corrections" (p. 91), found that parents experienced a loss of an expected normal child and that "the fantasied normal child had to be mourned before the parents were able to accept the child who was defective" (p. 92). The study was completed when many of the diagnoses of CHD were not made in the neonatal period, and those that were made at this time usually resulted in a fatal outcome. Consequently, it does not reflect the current situation of most CHD being diagnosed during the neonatal period and increasingly numbers being diagnosed antenatally.  Antenatal Detection of Congenital Anomalies Much of the empirical work related to the antenatal detection of congenital anomalies is limited to medical and surgical reviews of antenatal detection program outcomes. Hutson, MacKenzie, Young, McNay, Whittle, and Raine (1985) reviewed the outcomes of 52 fetuses that were diagnosed in utero in terms of the course of medical and  19  surgical events. Parents' experience was not studied, but the authors comment that: one of the disadvantages of this new knowledge is its effects on the parents. Many couples are now faced with enormous anxiety and dread about their unborn child, often long before delivery. This circumstance needs experienced and sensitive counseling, as well as expert advice about the effect of the apparent abnormality on the child-to-be (p. 622). Griffiths and Gough (1985), neonatal surgeons, acknowledge that "the effect of the antenatal diagnosis of a fetal abnormality on the mother, on the baby itself, and on their medical and nursing staff has been ignored in published reports" (p. 623). They present six case reports and then state conclusions and recommendations. Considering the long period of time that the mother must wait before the baby is born, they doubt whether the news of the defect is beneficial for the mother if it does not result in termination of the pregnancy. "Enormous feelings of fear, guilt, and inadequacy develop, and reassurance that the eventual outcome should be satisfactory may be to no avail. Rejection at birth, both of the baby and of the hospital, is not surprising" (p. 624). The mothers of the babies in the six cases were not interviewed, the cases only describing the series of medical events from time of antenatal diagnosis to birth, to the confirmation or disconfirmation of the antenatal diagnosis, to the resolution of the diagnosed problem and to death in one case. The recorded fact that one mother "refused to visit or telephone the hospital for three months"  20  (p. 623) could account for the conclusion that rejection of the baby or the hospital could occur. The other conclusions are not substantiated. Costello (1987) describes "the concerns and emotional reactions which pregnant women (and their families) experience when informed they have a fetal abnormality" (p. 62). As the social worker on a multidisciplinary team involved with 150 families since February 1982, in a fetal medicine and surgery program in Colorado, Costello presents the issues and concerns of the families. She describes interventions employed by the team of professionals during four phases, 1) initial phase, 2) decision making phase, 3) delivery phase, and 4) follow-up phase. Costello's account of the "psychosocial management of patients" in their program is detailed and informative, but is based on the experience of the professionals. The value of Costello's suggestions, born out of "our experience", cannot be minimized considering the lack of knowledge available related to the advancements in antenatal diagnosis. Nurse researcher, Matthews (1990), has described "the experience of known fetal malformations" from the perspective of 20 women "who had 'lived' this experience" when referred to the Fetal Medicine and Surgery program in Colorado. Employing a phenomenological approach, Matthews interviewed five women during their pregnancy, three of whom had known about their baby's "malformation" for two weeks and the other two for six weeks. Fifteen women were  21  interviewed at various times from one month to 17 months following delivery. Matthews (1990) describes an Expectancy of Loss Model, which includes six phases: Uncertainty, Verification, Preparation, Reconfirmation, Reparation, and Resilience. She concludes that the information the women received during pregnancy regarding their baby's congenital anomaly had a positive impact on their experience. More specifically, the information received antenatally provided a basis for decision making, allowed for the initiation of anticipatory grief reactions, and helped to decrease guilt and blame. As well, mothers were reassured regarding the care their baby would receive at birth because the physicians were informed of and prepared for their baby's problem before the baby was born. The method employed elicited the explanatory model of the women who had experienced antenatal diagnosis. A vivid description of their experience was constructed and the positive conclusions regarding the benefits of antenatal diagnosis was based on the women's experience. A limitation of the study is that the fathers' perspective was not elicited and the congenital anomalies that were diagnosed were of a severe nature. All women experienced the death of their babies, nineteen babies dying shortly after birth, one baby at four days of age and one within the neonatal period. Examples of some of the non-research based literature include that of Clark and DeVore (1989), and Lorenz and Kuhn (1989). As indicated earlier in the discussion these articles present the perspective of  22  physicians, perspectives from the professional sector, not from the popular sector. Green (1988) suggests how nurses can help parents through the crisis of prenatal diagnosis, using anecdotal accounts of three couples to illustrate the needs of these parents. The recommendations, focused on helping parents with their grief and loss, reflect the assumption that most babies diagnosed with health problems antenatally do not survive. This is not the case with the antenatal diagnosis of congenital heart defects. Antenatal Detection of Congenital Heart Defects  Literature related to the antenatal diagnosis of CHD is limited to medical studies that review the experience that has been gained with the relatively new technology of fetal echocardiography. Allan and her colleagues report on findings gathered over an 18 month period with 1757 fetal echocardiograms on 989 antenatal patients (Crawford, Chita, & Allan, 1988). Cardiac anomalies were accurately predicted in 74 cases. A false negative diagnosis was made in 16 cases, the majority involving minor anomalies with a good prognosis and a survival rate of 81%. The authors conclude that accurate diagnosis of congenital heart disease can be made during the second trimester, from approximately 16 weeks gestation to term. Oberhaensli et al. (1989) review their experience in much the same way with similar results.  23  No literature was found which addressed the experience of parents who learn of their baby's congenital heart defect antenatally. Synthesis of Current Knowledge Some empirical literature addresses the experience of parents who learn of their baby's congenital anomaly at birth. Although the methods are frequently unclear or weak, this body of work represents efforts to elicit parents' perspective for the planning and providing of health care. Literature regarding the experience of parents who know about their child's congenital anomaly antenatally, represents the perspectives of the health care professionals, not the parents. Matthews' empirical work represents the kind of research that is needed as the field of antenatal diagnosis continues to develop. She discovered and described the experience of women who found out about their baby's congenital malformation during pregnancy. Similar research related to the antenatal diagnosis of congenital heart defects is necessary in planning programs to meet the needs of these men and women and their families.  24  CHAPTER 3 Methods Introduction  The research question directed the investigator to the naturalistic research design of phenomenology. "Phenomenology is the study of human experience from the actors' particular perspective (Knaack, 1984 p. 107). The goal of phenomenological research is "to understand human experience from the individual's perspective. To accomplish this, the investigator must set aside any preconceptions about the meaning of the event/experience and open himself fully to the phenomenon as it presents itself" (p. 108). Phenomenology is congruent with the conceptualization of the problem that is based on Kleinman's cultural system model. The cultural system model gives direction to elicit the explanatory models of the participants in health care interactions. In obtaining perceptions of parents' experiences of knowing about their baby's heart defect antenatally and attempting to identify common themes in these experiences, the researcher hopes to better understand the phenomenon of antenatal diagnosis of CHD so as to benefit others living the experience. Sample Selection and Selection Criteria  Theoretic sampling was used to obtain participants for this study as the researcher was "familiar with the setting and the actors" (Morse,  25  1986, p. 184). "The criteria for sample selection requires that the individual have experience with the topic under investigation and be able to communicate it" (Knaack, 1984, p. 111). All parents, therefore, who found out about their baby's heart problem during the antenatal period met the criteria for selection. In addition, because the researcher was interested in the postnatal experience as well as the experience antenatally, a second criteria for selection was that at least six weeks had passed since the baby's birth. Participant Recruitment Participants were recruited through the Cardiology program at B. C.'s Children's Hospital. The cardiology clinic nurse received the names of appropriate parents from the cardiologist performing the fetal echocardiograms. The clinic nurse contacted these parents after their baby was born to assess their interest in study participation. All families approached by the cardiology clinic nurse were enthusiastic about the study. She obtained permission for initial contact (Appendix A) from them and the researcher then contacted them to offer more information about the study and to arrange for the first interview if they agreed to participate. Description of the Participants Although both parents' participation was not required, both parents were present for all of the interviews, except for two of the  26  second interviews where the fathers were absent. A total of sixteen parents of eight children with CHD were interviewed. Demographic data were collected to provide a descriptive profile of the participants (Appendix D). Hall Johnson (1986) states that the extent of family reactions to the birth of a child with a physical disability differs from family to family. She identifies some influential factors, of which the following were addressed through the demographic data collection: family preparation before birth, family economic status, the extent of the anomaly, family cultural background, age of the family and its members, and sex of the child. The age range for mothers was 21 to 37 years and for fathers was 23 to 42 years. All were two parent families, the couples having been together for 2 to 13 years. One couple separated during the time between the first and second interview. Family income ranged from less than $25,000 to greater than $55,000 per year. Most parents were high school graduates, five with some college or university education and four parents (three fathers and one mother) were graduates from college or university. One third of the parents were born outside of Canada in countries where English was not the first language (i.e., Croatia, Netherlands, Philippines, Slovenia). All parents had English language skills sufficient for the interview process Six of the eight couples had one other child besides their child with CHD. Two couples had another child with CHD and one of these  27  couples also had a child who had died. For two couples, their baby with CHD was their first child. The age of the child diagnosed antenatally with CHD ranged from 2.5 to 24 months at the time of the first interview, the average age being 6.75 months. Six of the children were boys . The antenatal diagnosis was made as early as 17 weeks and as late as 35 weeks; the average time of diagnosis was 27.6 weeks gestation. All babies except one, were born at the tertiary perinatal hospital where the antenatal diagnosis was made and six of the babies, including the one that was born at an outlying hospital, were transferred to the pediatric hospital shortly after birth. Using a four category classification of CHD, where a classification of one represents the least serious and most treatable heart defects and a classification of four represents lethal inoperable heart defects, three babies had class two heart defects and five had class three heart defects. The babies were in hospital following birth for 6 days to 3.5 months. Five babies underwent heart surgery shortly after birth. Data Collection Procedures Data were collected using unstructured and semistructured interviews with one, but most often both parents, in their home or at a location of their choosing, at least six weeks after their baby's birth. Once permission for initial contact was obtained by the cardiology clinic nurse, the investigator contacted the parents by phone or in person, as two of the couples were contacted while their babies were still in  28  hospital. All potential participants contacted by the investigator keenly agreed to be participate. Time and location of the interviews was planned according to the parents' wishes in an attempt to minimally impose on their family life. The investigator acknowledged the busy lives of the parent participants and reassured the parents that the interview could be rescheduled at short notice if another time was more convenient. The first interview with one family was changed several times as their child was sick and the family was experiencing other stresses as well. Most interviews were conducted in the parents' home in the living room or around the dining room table. Four couples resided more than a one hour commuting distance from the hospital; four of the eight interviews conducted with these parents occurred at the pediatric hospital. The investigator travelled four hours on two occasions to conduct the other four interviews with these out-of-town participants. Interviews conducted in the hospital were done in a large playroom or conference room where the parents and researcher could sit comfortably on couches and the children could be present playing or being held by one of the parents. Children were usually present during the interviews. The unhurried nature of the interviews allowed parents the freedom to attend to their children during the course of the interview, whether to feed the baby or to ensure the older child was occupied. Interviews ranged from 45 to 90 minutes, with first interviews generally being longer than the second ones. The interviews were audiotaped and transcribed for analysis.  29  Initial interviews were unstructured. Open ended trigger questions (Appendix C) initiated the interview. In most cases only the first trigger question was used, as the parents willingly and vividly recounted their experiences with minimal prompting. The researcher "tracked" topics during the interview that could potentially require further elaboration and invited the parents to further discuss these topics only after they had finished expressing their thoughts; "tracking serves to minimize the interviewer's interference with the natural flow of subjects' conversations" (Sandelowski, Davis & Harris, 1989, p. 81). Second interviews were semistructured in order to clarify issues discussed in first interviews and to validate the findings. Little new information emerged during second interviews. The researcher also used this interview to validate the themes that had emerged from the interviews with all participants. The investigator had previous experience as a research assistant in a phenomenological study, in which she interviewed parents of children with complex health care needs living in the community. The interview process is foundational to the phenomenological study and must be reflected upon at many points during the inquiry. The researcher journalled pertinent details regarding the bracketing process prior to each interview and also recorded reflections of each interview that may not have been captured in the audiotaped interview.  30  Data Analysis Data were analyzed simultaneously with data collection according to the following steps based on Giorgi's (1983) data analysis steps, as outlined by Ornery (1983, and on Anderson's (1992) recommendations for phenomenologic data analysis:  Step one. The entire transcript of the interview was read by the researcher to gain a sense of the whole. Errors were identified and corrected by listening to the recorded interview and checking the transcript against the tape.  Step two. The transcript was reread, this time identifying what was not understood by the researcher, as well as that which was not clear and not sufficiently explored. These areas were noted on the transcript and addressed in the second interview.  Step three. The transcript was reread, this time more slowly, delineating each time a transition in meaning was perceived, thus identifying the individual meaning units. This preliminary data analysis was based on the data from the interview transcript only. The researcher bracketed her preconceived ideas and experiential base at this point.  Step four. The researcher then reflected on the meaning units and transformed the meaning from concrete language into broader conceptual terms. Data from other participants in the study were compared and similarities and differences were noted.  31  Step five.  The insights were integrated and synthesized into the  developing descriptive structure. Step six.  The researcher returned to participants for the second  interview, clarifying that which was not understood and encouraging elaboration of areas the researcher noted from the first interview with the same participants. The researcher also shared the developing descriptive structure with the parents for the purpose of validating the findings. Step seven.  Steps 1 to 4 were completed with the second  interview and then the first and second interviews were compared. Redundancies in the meaning units were eliminated, clarifying or elaborating the meanings of the remaining units by relating them to each other and to the whole. Step eight.  Additional insights were integrated and synthesized  into the descriptive structure. Trustworthiness Criteria  As reliability and validity are the criteria of rigor in quantitative research, credibility, transferability, dependability and confirmability are the trustworthiness criteria essential to qualitative research (Lincoln & Guba, 1985). Credibility  Activities employed to increase credibility were "prolonged engagement" and "persistent observation". Although a minimum of  32  two interviews was planned for each couple, the researcher advised the participants they were free to contact her with further thoughts and comments regarding their experience between interviews or they could note them for discussion at the next interview. Parents frequently recounted things during the second interview that they had thought about since the first interview, stating that they had not wanted to forget to raise the matter. Lincoln and Guba (1985) identify "going native" as a potential threat to credibility related to prolonged engagement. As much as the investigator wants to have sufficient opportunity to hear from the participants, prolonged engagement can put the researcher at risk for losing her "detached wonder" (p. 304). Awareness of this potential threat is the "great step toward prevention" (p. 304), and in this study was achieved by ongoing reflective journalling by the investigator. As prolonged engagement provided scope to the inquiry, persistent observation provided depth; "The purpose of persistent observation is to identify those characteristics and elements in the situation that are most relevant to the problem or issue being pursued and focusing on them in detail" (p. 304). This was accomplished by the "tracking" of topics during each interview, and by asking participants to elaborate on topics discussed in previous interviews. The relaxed nature of the interviews allowed the investigator to take time during each interview to reflect on what the parents had recounted, often while one or both parents got up to attend to their children or while  33  sipping a cup of tea, graciously provided by the parents. The parents' keen willingness to share their experience of knowing about their baby's CHD antenatally allowed the researcher to pursue topics in an in-depth way. A potential threat to credibility related to persistent observation is that of premature closure, that is, the investigation is terminated before the full picture is obtained. In this study, the parents' vivid recollections of their experiences and responses were often repeated word for word from the first to the second interview. The investigator noted this as an indication that the experience was being shared honestly and consistently and, that a point of saturation regarding a description of the experience was being approached. "Member checks" were also employed, this being "the most crucial technique for establishing credibility" (Lincoln & Guba, 1985, p. 314). Informally, participants were asked to confirm data and findings that they provided as the interview progressed. The investigator frequently summarized what the parents had said and usually the parents' response was "that's right", or "that's it exactly". During the second interview, the investigator, after clarifying her questions from the analysis of the first interview, summarized her impressions of the couple's experience. Again, the parents validated the investigator's findings by confirming that her description accurately reflected what they had experienced. Formal checking involves presenting the findings to "knowledgeable individuals" from the source group (Lincoln and  34  Guba, 1985). Because the "source group" in this study was relatively small to start with, the overall findings were presented to six of the couples during their second interview. There were many confirming nods of the head, smiles of recognition, and expressions of agreement with the description of the experience as it was presented to them by the investigator. There was a sense of the parents wanting to meet the other parents who had such a similar experience. There were also questions about the other families' experience which could only be answered in a general overall fashion. Formal checking was also done with two couples entered into the study after the description of the experience was validated by the first six participant couples. These four additional parents validated the description. As well, further data were collected from these couples as they related their own personal experiences with the antenatal diagnosis of their baby's CHD. The final description was further validated with one of the final two couples. Transferability  Transferability, in the strictest sense, cannot be established by the investigator, because the true test is when "other people (other researchers or readers) can recognize the experience when confronted with it after having only read about it as a study" (Sandelowski, 1986, p. 30). The researcher "can provide only the thick description necessary to enable someone interested in making a transfer to reach a conclusion about whether transfer can be contemplated as a possibility" (Lincoln &  35  Guba, 1985, p. 316). The final description of the experience therefore, was presented to a clinical nurse specialist who had worked with families of children with CHD for several years and as well, had experienced a false positive antenatal diagnosis during her own pregnancy. She stated that the described experience was recognizable and familiar. As well, the findings were shared with a nurse who works with children born the congenital anomaly of spina bifida and their families. She stated how amazed she was with the similarity of the description with her observations of parents who find out about their baby's spine malformation antenatally. "This is so familiar, so familiar", "this is classic", and "very very similar" were expressions of her confirmation of the transferability of the findings. Dependability and Confirmability  Dependability and confirmability are jointly established through a clearly articulated audit or decision trail that describes the study from its beginning to its end, as reflected in this document. Related to this is one final technique that was employed to establish trustworthiness, that of a "reflexive journal" in which the investigator recorded information about "self" and "method" (Lincoln & Guba, 1985, p. 327). The trustworthiness of the phenomenological method is enhanced through bracketing, the process whereby the researcher shifts focal attention by reflective orientation and suspends theoretical assumptions, interpretations, labels, categories, and judgments thus eliminating apriori assumptions (Pallikkathayil & Morgan, 1991, p.  36  196). Reflections on the interview process as outlined in the "Data Collection Procedures" section were recorded in the journal, as well as methodological decisions and rationale (Lincoln & Guba, 1985). Procedures for Protection of Human Rights  Participants were fully informed and received a written statement regarding the nature and intent of the study, their rights as participants, and the responsibilities of the researcher (Appendix B). Written consent (Appendix B) indicating they had received this written explanation and were agreeing to participate in the study, was obtained from each participant before the first interview was conducted. As there was the possibility for the researcher to have had contact with the potential participants of the study during their baby's hospitalization, the cardiology clinic nurse, whom parents had not met, approached them to elicit their interest in study participation. This was to ensure that they did not enter the study out of obligation based on their relationship with the researcher, who is the cardiology nurse clinician. Because of the personal nature of the interviews and potential personal risk of disclosure, the participants were assured that they could withdraw from the study at any time. Identifying information was not present on the transcripts and transcripts were only read by the researcher and thesis committee. Subjects will have access to the results of the study.  37  Summary The naturalistic research design of phenomenology, congruent with the conceptualization of the problem that was based on Kleinman's cultural system model was employed to discover and describe the experience of parents who knew about their baby's heart problem antenatally. Sixteen parents of eight children with CHD participated in the study. Simultaneous data collection and analysis was carried out by the investigator with a total of fourteen interviews conducted. The description of the parents' experience, which will be presented in Chapter Four, was validated by the participants in the study, as well as by others in the health care field who have worked with these and similar families. The method enabled the investigator to produce a "thick" description of the experience from the parents' perspective which will benefit others who will be similarly affected by the antenatal diagnosis of their baby's CHD. As well, the phenomenological method provided significant benefits for the participants involved. Several parents expressed their appreciation of the opportunity to talk about their experiences. They acknowledged the unique opportunity that the interviews provided them as a couple in that they could hear about each others' experience. One mother, in the initial phone contact, stated that she was so glad that someone really wanted to hear about what she and her husband had been through. This same mother asked  38  for a copy of the interview tape, intimating that it represented a significant experience for her and her husband. The method also allowed the inclusion of participants whose first language was not English. Two of these parent participants in particular were apologetic about their English. The prolonged and open-ended nature of the interviews allowed them adequate opportunity to formulate their thoughts in words and non-verbal expressions that clearly depicted their experience, despite their feelings of inferiority regarding their English language skills. One mother stated, "I don't know it's, well I'm not really I can't really talk that good English. It's so hard to express what, you can see maybe on my face (laughs)." Her words, as well as her facial expressions, and the words and bodily expressions of all parents in the study, provided the bountifully rich data that lead to the description of their experience of knowing about their baby's heart problem antenatally that will now be presented in Chapter Four.  39  CHAPTER 4 Presentation and Discussion of the Findings Introduction  The goal of this study was to discover and describe the experience of parents who knew about their baby's heart problem before the baby was born -- to elicit the explanatory model of the parents so that we, as health care professionals, can more effectively provide care for these families. As the parents' perspective on the meaning of this experience was gained, it was evident that while each parent's experience was unique, there were common themes. Although the small and somewhat diverse sample may have placed some limitations on the findings, there were three distinct phases that the parents experienced. Within each of the phases the participants recounted their feelings, responses and efforts to manage what they were experiencing. The common threads in the participants' accounts enabled the investigator to describe the experience of parents who knew about their baby's heart defect antenatally. The experience of parents who knew about their baby's heart defect antenatally, was conceptualized in terms of how they lived through or managed three phases. The first phase, "Suspicion to Diagnosis", accounted for the time from when there was suspicion raised regarding the baby's heart to the time that a fetal echocardiogram was done and the suspicion was confirmed (a congenital heart defect was diagnosed).  40  For most parents, this period seemed to last forever, even though it may only have been a few days in duration. It was also a time of intense emotional responses and uncertainty as they hoped for the best and yet prepared themselves for the worst. The second phase, "Diagnosis to Delivery", was best characterized by one mother's statement; "and so from there [the day of diagnosis] we picked up the pieces." Picking up of the pieces involved allowing the news "to sink in" and then a rallying to go on with the rest of the pregnancy. The emotional responses were less intense than in the first phase, and often occurred in a roller coaster fashion, "one day I would be fine and the next day I would cry and cry". Uncertainty also characterized this phase. The third phase, "Birth to Relief", began when the birth of the baby was imminent, that is, labour began naturally or by induction, and ended with the final confirmation of the antenatal diagnosis after the baby was born. The parents, most of whom simultaneously prepared themselves for worst and the best, were in most instances surprised that the baby's condition at birth was better than they had expected. In this chapter, the parents' experience will be described in terms of these three phases which represent the anchors of the analytic framework that has been constructed to describe the parents' experience (See Appendix F). The main themes of each phase will be presented and relevant concepts from the literature will be discussed to enhance understanding of the findings, to challenge the findings, as  41  well as to demonstrate that there are aspects of this experience that have not been accounted for in the literature. The parents impressions of their overall experience will also be presented. Phase One Waiting for the "Brick Wall": Suspicion to Diagnosis  Parents vividly recounted what it was like for them from when they first found out that there was a possibility that their child had a heart problem, to the time that this suspicion was confirmed by the fetal echocardiogram at the tertiary referral center. One father described this as the "the toughest part" of their whole experience, "the wait, I mean that wait just killed me." For other parents things seemed to be happening fast as arrangements were made for their fetal echocardiogram. This phase of their experience consisted of several key pieces. Suspicion Raised  Each couple had distinct recollections of the time of aroused suspicion regarding their baby's heart. For one couple, a routine obstetrical ultrasound because the mother was not gaining weight, raised suspicion as to whether one of the heart chambers was missing. They were referred to the tertiary center immediately for a fetal echocardiogram. The mother stated that although she thought that there might be a problem, she just could not believe that there would  42  be a problem. Her uncertainty was reflected in her 'dialogue' with herself: M:*^I thought that he was strong inside me and I told my husband I know there's something wrong with this baby but, you, the doctor didn't tell me something was wrong, but I don't think there is and the doctors examined him, you know, and then he was checking him. They said that everything had been going normal. As this mother struggled to make sense of the raised suspicion, her husband had decided that all was not well with the baby. "Well that's what I said to M, I said, you know if this wasn't such a major problem I said they we, they we wouldn't be going to [the city of the tertiary center] in such a hurry." Another mother, who was hospitalized for vaginal bleeding, had several ultrasounds to assess the baby's status and suspicion was raised. M: Then we went to [local hospital] and then they put the monitor on and everything and the baby is moving. And, you know, said he is okay and when I have an ultrasound every now and then and you know they have a small screen and you can't really and the hospital is under renovation. So you know they have to put the machine upstairs in your room to do the ultrasound there ... and then I think they find something you know, like heart beat or something and then they sent me to the [tertiary center] to have an ultrasound there. This woman did not "feel anything" at this time of raised suspicion "cause it's not sure ... they're [the doctors] not sure." She could not  *Abbreviation Key F:^= Father M: = Mother [ ] = Non-verbal of F or M and omissions to preserve confidentiality ( ) = Researcher  43  imagine that anything could really be seen considering the small size of the ultrasound screen; "they can't, I can't hardly see the thing like cause it's really very small screen." Her uncertainty was also evident in: M: ... but I'm still thinking of that. Maybe there's nothing. There's something wrong with the baby but I'm not, I'm not a hundred percent sure yet. So I'm not thinking really a hundred percent that there's nothing, there's something wrong with the baby 'til I went to the [tertiary hospital] and had my ultrasound. Another mother had an ultrasound because she was "small for dates" and was unprepared for suspicion to be raised regarding her baby's heart. M: I didn't know what to expect ... it was just routine to see why he was so small and it was just like one thing and it snowballed into everything else .... he told me that he has fluid around his heart and that's all he told me and he'd like me to go back to my doctor and he made arrangements to go over to the is it Sick Kids hospital? This woman spoke vividly about her referring doctor telling her not to worry as he arranged for the fetal echocardiogram. M: Don't get yourself all worked up. It's like well, excuse me, but you just told me something is wrong with my baby so, yeah, I'm going to be all worked up. I'm going to be upset ... because of course there's something to worry about otherwise I wouldn't be, you know, go to my doctor in the morning, ultrasound, my doctor and then, you know, a hospital in [city of tertiary center], you know, in a couple of days and, you know, the thing that scared me too. They were always emergency this and emergency that, like, emergency ultrasound, emergency this and it's like emergency, what's the emergency?  44  Her husband commented, "When they leave you in the dark, when they tell you not to worry, that's the worst thing because that's when you worry more." This interaction between the couple and the doctor caused them to feel that something was wrong with their baby. For another couple, comments by the referring doctor "set their minds at ease." The mother recounted the doctor saying, "some people's hearts lean to the right. It's nothing to worry about but we want you to come back for this another ultrasound, an echocardiogram on the fetus." The time of raised suspicion, therefore was a time of uncertainty. Parents tried to convince themselves that there really would not be a problem, while at the same time were alarmed at having to go for a fetal echocardiogram and wondering whether a problem really would be discovered. Waiting  The time span from raised suspicion to the fetal echocardiogram appointment varied. The two couples with previous children with heart defects, were referred for a fetal echocardiogram at 16 to 20 weeks gestation. For them the wait for news about their baby's heart began even before they were pregnant and each couple dealt with this period differently. One couple thought because they had already had two children with heart problems it would not happen again. The mother stated, "I think because we'd already had two children with heart problems I thought it was pretty rare ... he [the doctor] said it was  45  possible, but I guess I didn't quite believe it was going to happen." The other mother who already had one child with a heart problem was more skeptical as she considered her previous experience. "Well, my daughter had the same problem, a heart defect. So I was sort of I had a idea that probably might, the percentage would probably be fifty, fifty. So I just took my chances and I was aware of that." For other parents, the time from suspicion to diagnosis ranged from a couple of days to three weeks, and their feelings about that time span varied. For some, things happened fast as in the case of two couples who were referred from a distance. M: ... so I went back to my doctor that morning and day after I went to [city of tertiary center] .... It happened so fast .... It happened so fast. F: Got home, an hour later the phone rings. This was a Tuesday. He [referring physician] says, "Thursday morning you're in [city of tertiary center]." No wasting time, bang, bang, bang. M: He phoned right away that day. For others, the time from the suspicious ultrasound to their fetal echocardiogram appointment felt "like an eternity." One couple was informed by telephone that the obstetrical ultrasound had raised suspicion regarding their baby's heart and were given an appointment for a fetal echocardiogram in six days time. They called back to their family physician for an earlier appointment, but were informed that the fetal echocardiograms were only done on Thursdays. They would have to wait until the following Thursday. The father stated that, in  46  retrospect, he wishes that they would not have been told about the suspicion until the day before a fetal echocardiogram appointment because the wait was the worst part of their whole experience as they agonized over what they would find out. "It's like someone saying you've got cancer, but you've got to wait a week and a half to find out if you really do." As much as the parents were anxious about what would transpire at the echocardiogram appointment, many of them tried to remain positive, one partner often trying to encourage the other to be positive. "He says, 'Think positive, think positive" One mother, trying to remain positive despite the fact that her sister had a baby die from CHD said, "You know even when we went there [the fetal echocardiogram appointment] I was even going to buy a bottle of champagne and everything because I thought the chances of this happening with [her sister] and me, I just thought, no way." The longest wait was three weeks; "practically three weeks to a month they made us wait". This couple also tried to arrange an earlier appointment without success and expressed how "awful" this waiting time was. While waiting, parents were preparing for the worst, yet hoping for the best. One mother could not help but dwell on all of the "what ifs" -- "what if he doesn't make it and what if they can't do anything", and yet also hoped that "it [the suspected defect] wasn't what it was". Her husband would say "believe it. You know they're going to be able to do something" and insisted that think positively.  47  One father who had a previous child with CHD prepared himself for his second child having a heart defect and, although he did not want the echocardiogram to show a heart problem, "that was almost too good to hope for." The other father who had previous children with heart defects decided he would not worry about the possibility of CHD. F: I think after what we've been through we're learning that we can deal with things as they come because I think if you start trying to imagine or plan ahead for something you don't even know is a fact yet, you can really sort of well you worry yourself. The fetal echocardiogram appointment itself, long-awaited for some, was vividly recalled by parents. The Fetal Echocardiogram  One mother recalled the exact date of the echocardiogram and for her that was "the scariest day, that was then, one of the scariest days." Many women commented on the length of time that the fetal echocardiogram took, as well as the nature of the experience. For one woman the procedure was a "most gruelling three hours .... very frightening .... it was very frightening .... this experience was very overwhelming." Several mothers recounted how long the procedure was: M: And then, well, I have [the pediatric cardiologist] and some specialist there to look at, you know the picture and the heart beat of the baby and all this stuff and he was, was very long, my goodness.  48  M: One hour, you know they look and look and look and stayed there for one hour and after that, you know [pediatric cardiologist] and he told me that there's something wrong with the baby. You know the baby does [said with emphasis] have a heart problem. Except in the two cases where the couple had a previous child with CHD, all fathers were present with their wives for the fetal echocardiogram. The father whose baby's heart was being examined for the missing chamber, described his experience at the echocardiogram as: F: ... but then coming down here was just hell ... Is it [the heart chamber] there? Is it not there? But then you're only worrying about that chamber right. Then when I'd seen the screen and I see four of them, I'm like [Sighs] whew, they're all there. And then all of a sudden, they tell oh it's not the chambers, it's the valve. It's like oh (Like you had that moment of) Of just high hope and then all of a sudden. Again in the second interview this father recounted the echocardiogram experience: "So I thought oh, everything's okay, it's all there, they said no, everything is not [said with emphasis] okay." The father who felt that the wait from suspicion to the echocardiogram was the hardest part of the entire experience described how at the time of the echocardiogram he waited for the doctor to look at the heart for "20 seconds" and then asked if the heart was normal, "I mean I'd been waiting long enough." The fact that the doctor immediately responded that the heart was not normal brought the following response from this father: "and then as soon as he said it that quick, I knew there must have been quite a serious problem for him to be able to tell me that quick." His wife wanted to cry when she  49  heard the doctor say that the heart was not normal and yet felt that she had to keep in control. M: But that was hard for me because I was laying there with them doing this and I was trying to stay calm and all of that and that was, that seemed like forever.... Well that's the thing I mean. I could have let it all out, but I just, like I figured try and stay calm. Let them finish what they're doing so they can see because you know like I couldn't tell what they were looking at and I'm sure you know if I got upset then maybe he [the baby] would have started moving around. One mother recalled that as the ultrasound progressed she was sure that she and her husband were going lose their baby. M: We went in and there was the pediatric cardiologist, [name of doctor] and there was [name of doctor] who was an obstetrician and of course [the ultrasound technologist] and, and they were talking and noticing that this tilt and they proceeded to do three hours of intensive ultrasound. During that time [the baby] was, began crammed in a corner which apparently was a better position than she had been in the week before. But she, they kept on speaking about how she wasn't cooperating, making little jokes about how we were going to have this behavior problem with her. And they were trying to be light about it, but it was the most gruelling three hours because during that time, it was very frightening. They kept on trying to get her to change her position so that they could see, that was making things more complicated. The fact that she was reversed was making things more complicated and for three hours, also we had to change rooms to go into a coloured ultrasound. So for three hours they mumbled to each other. They told us that they would make full disclosure at the end, once they figured out what's going on and they would make a decision at the end, but they were not going to divulge as they were going along what they were mumbling about. And it was very frightening. I know we felt like we were going to lose her as things progressed because they were mumbling and we were hearing bits and pieces.  50  All parents came to the echocardiogram appointment uncertain as to what the outcome of the assessment of their baby's heart would be. The process of the echocardiogram itself seemed to add to their uncertainty. The length, "the mumbling" in "medical terms that we'd never heard", the "looking and pointing at the things there" and "then the machines are going off and they're doing the sounds and, it's intimidating" did nothing to reassure them during this difficult part of their experience. Unfortunately, their uncertainty was not alleviated to any great extent by the news they received concerning diagnosis because certain outcome predictions could rarely be made concerning their baby's confirmed heart defect. Suspicion Confirmed  When the fetal echocardiogram was completed, parents were given information about the results. Parents' descriptions of this part of the experience were on the whole, brief and sketchy. One couple recalled being told about "all the holes in the heart and everything that was wrong", but also recalled that they were not able to take in the information that they were being given. M: The doctor explained to us, you know ... about the pictures and he [the pediatric cardiologist] showed us what was happening and stuff, but it was, it was just kind of going like this [hand gesture showing it going over her head]. It was too much to take in .... we just didn't really kind of hear. The mother who thought, as the echocardiogram progressed, that they would lose their baby said that:  51  M: They [the doctors] drew pictures for us and they told us, I can't remember what they told us. I think they told us she had a VSD at that time. Yeah that was what the original diagnosis was .... They weren't sure that she was going to come out, when she came out whether she was going to come out pink or blue .... but they drew pictures, you know, tried to be comforting and sent us on our way. The doctors "not being sure" was mentioned by many parents. Although suspicion regarding a heart problem was confirmed, implications of the diagnosis could not be known until the baby was born. In most cases, the doctor told parents what might be done for the baby depending on how the baby was at birth and many parents, such as this father, felt some relief: "Okay, this is what's wrong. That was kind of a relief. And then they started telling us what can be done." Before the echocardiogram appointment, many parents prepared themselves for the worst. Even though suspicion of the heart defect was confirmed, they recalled their sense of relief as they heard the diagnosis and learned that something could be done for their baby; "they had a really good idea of what they were going to do so that so that gave us hope in that aspect." The suspicion to diagnosis phase was recalled most vividly in comparison to the experiences of the other two phases. This was evident in the second interviews when parents recounted word for word as in the first interview, aspects of their experiences, as well as their responses during this phase.  52  The Parents' Responses (So if you think, if we just go back now, if you think of the time when you first found out [about your baby's heart problem], what stands out in your mind?) F: A brick wall [emphasis added]. Parents vividly recounted their responses to this phase of their experience. They described intense feelings that were unmatched in the rest of their experience, connoted by the "brick wall". Parents described their experience as "feeling terror" and "being terrified": F: It's a feeling of actually, you know, thinking about Freddie Kruger going down your throat and pulling out your insides, that's the feeling as I can explain, just terror, terrified, you know. As well parents' responses included shock, guilt, crying, anger, fear, confusion and wondering what it all meant. "I was shocked". All parents, except for one couple who had a previous child with CHD, were shocked at the diagnosis of their baby's heart problem. They had not been prepared for such news and each one gave reasons for not believing that their baby would have a heart problem. Some had no family history of heart problems. The couple who had two previous children with heart defects were shocked because they were sure that it would not happen a third time. Others emphatically expressed how healthy they were and how "good" they had been during the pregnancy: eating right, living carefully, not drinking, not smoking or taking drugs --"I didn't even take an aspirin." In their minds, vigilance during pregnancy precluded them from having a baby with a health problem. For example:  53  F: I remember when we were painting the house when M was  pregnant, she didn't even come over here when we were painting.  M: We have a huge cherry tree in the backyard, I wouldn't even eat the cherries off there because of the chemicals that might have been sprayed on there. You know it was just, tried to be so careful. One father talked about how "perfect" and "beautiful" his first child was and said, "Just like [first-born] so we're anticipating again just like J, and then the eighth month there it was .... suddenly, all of a sudden one month before the delivery of the baby, you've got a potentially very ill baby." They were shocked because they had a healthy baby and anticipated another healthy one. Parents' "going to church every Sunday" and "only asking for two children" were also cited as reasons that they were not at all prepared for a problem and thus contributed to their shock and disbelief at the diagnosis of CHD. "Maybe it was my fault". Parents in their shocked state could not believe that their baby had a heart problem, but as the news started to "sink in", one of the first responses was "what caused it?" As they mulled over this question, they inevitably questioned their own role in the heart defect's occurrence. What had they done to cause the heart defect in their baby? Answers to this question varied and parents debated their conclusions within and between themselves. One mother could not help but think that she was being punished for something she had done in the past, "like maybe I went through a stop  54  sign one day and that's my punishment for doing this, you know, or something I did in my past." Another mother, who was depressed during her pregnancy remember her mother telling her about a woman who was depressed and had two children with heart problems. M: So that's what my parents always tell me, you know, if you're depressed, you know, like during your pregnancy might be, like heart. The heart will be affected or something. That's why before, I'm not pregnant when she's always telling me that. But now that I have this [baby with a heart problem], I said oh my God, my mother's right. Her husband also wondered if this could be the cause; "Could be true, just like smoking or drinking maybe, so too much depression might really affect somebody when she's pregnant." Another mother was convinced that her smoking and drinking over Christmas was the cause of her baby's heart problem. Her husband countered her statement with "One or two, two of those flimsy things you drink? ... I don't think so." This mother also wondered if she had gotten pregnant too soon after her first baby which had been born by cesarean section: M: Yeah, yeah, because maybe my body's not back, you know, where it used to be and then, he [previous son] was only six months and I'm pregnant. Cause really your body needs to, to relax and say got to go back in shape first, you know, but sometimes it happens I tell you.  55  Her husband's response to this was, "Oh I told her no, you, you're, you know, total B.S." Fathers played an important role in reassuring their wives that they had not done anything to cause the heart problem. Deliberations about their responsibility for their baby's heart problem were accompanied by expressions of self-doubt: F: I felt inadequate, you know that maybe it was my fault ... It's just a feeling of inadequacy that you can't. That you didn't perform properly and make a normal baby, you know. Or you've done something wrong. When all possible causes were discussed, many parents returned to the cardiologist's explanation that the heart defect was most likely a random event. One father reminded his wife of the incidence of CHD, intimating that it just happened because it occurs in a certain number of babies each year. Her response was, "I know ... why ours? Why can't it be somebody else?" To this the father responded, "And if it happened to somebody else, they'd say 'why, why us?'" When parents could not find a satisfactory explanation for their baby's heart problem, they then asked why did it have to happen to their baby: "And, I don't know, just why my baby?" and "You still think, why, why has this happened you know, that question will probably always be there." "I couldn't stop crying". Many parents recounted how upset they were when they heard the news of their baby's suspected heart defect and then when the suspicion was confirmed. M: I was just hysterical and then I came home and poor F. I came in the door crying my eyes out and I couldn't even get out what's the matter.  56  M: I was really scared and I started crying and I just, cause you don't know what that means, and, like you ... I just wasn't used to it and I wasn't ready for something. M: All these things are happening to your baby and that are going to happen to you and it's just, you're going yeah okay, yeah, okay and it's just all flying over you and then when I got home here, that's when everything and I cried and cried and I, you know, I was just so upset. I felt like a real idiot because you don't know why you're crying. You just seem to dwell on all the negative things. One father talked about how much he cried, "lots of tears were shed over it". His wife was hesitant to talk about her tears and although she later confirmed that she had cried, in her initial description of her response she did not use the word cry. (Were there tears for you?) M: When I see him taking it so hard [both talking] F: When we first heard I gave you a hug. M: Yeah when he gave me a hug that's when I [pause] I wasn't going to, you know, I wasn't [pause] then he hugged me and then you know. Others described feeling "very depressed", "out of control", "really upset", "unstable", "all worked up", and "scared". Parents worried about the baby's heart problem and about the effect of this worrying on the baby. A diabetic mother stated, "so it all added to, that that, my insulin was increasing by the minute." Another mother recalled her husband telling her that she should stop crying because it might be harmful for her and the baby, "it will just affect the whole family."  57  This couple's baby was born a month early and the mother attributes the early delivery to her upset emotional state. The two couples who had previous children with CHD were also upset with the news their baby's heart defect, but drew on their previous experience with CHD in coming to terms with the diagnosis. For the couple who was sure that their second child would also have CHD, the news was what they had expected. The mother remembered thinking: M: Well it will probably be similar to [first child with CHD]'s problem and I'll have to go through the same thing and I was very confident that the doctors knew what they were doing and that she was fine. So it didn't really affect me that much, but you know you do have concerns to make sure that everything goes fine. Her husband recalled: F: I didn't like to hear the news, but the way we figured it out is that's the way it's going to be, you know. If it's going to be like [first child with CHD] who cares, we'll just go for it." "I was so mad". Some parents responded with anger during this time of finding out about their baby's heart problem. It was always focused on someone else other than each other or the baby. For one father it was anger towards the person he was staying with when he first heard of his baby's heart problem. F: I was staying with my uncle at the time and he kept, he's kind of a callous person. He doesn't care about anything, but himself. So he kept bugging me, bugging me and that's how I lost it, you know. I just basically lost it. I told him to shut up. I said, "I'm going to lose my temper."  58  This father made it clear that this anger was uncharacteristic of him and that it was not directed at the baby. F: Angry (chuckles) angry like I don't know, to actually explain it. I was angry at the point that I didn't know what I would do. You know, if somebody did something wrong to me I mean I would probably hurt them pretty bad and I'm not a violent person.... It's a feeling of, even now still, that you want to go out, you know, onto the balcony and scream. So the whole entire world can hear you do it.... That's the amount of anger you want to release. You know, you just want it all to come out.... It's just an angry feeling. I don't know who at, not at [the baby]. I'm not angry at, I love [the baby], but Pm angry. I'm still angry a little bit I think. One mother was "mad" and wanted to blame someone. Despite her sister having a baby with CHD that died within twenty four hours of birth, this woman had been reassured by her family physician that CHD would not happen in her pregnancy. M: Like I said, when we found that out I was so mad. It was like I wanted to blame somebody. And see I wanted to blame I guess whoever ... I figured they should have known ... I went for a check up and all this stuff and told my doctor. And they do all your family history and I told them about my sister and they said, "No, it's not hereditary and don't worry about it." And you know then I think well then they should have been looking for it you know... But see I was mad at my doctor because I figured she should have known before hand. One father made a point of saying that there had never been any blame between them as a couple, "We didn't turn on each other, we stuck together ... we never blamed each other, we never felt that one or the other one was responsible, we never felt like that."  59  One mother admitted to feeling angry, but talked about her reluctance to express it. M: But I thought I can't get angry cause then God's going to be mad at me and it's just like, that kind of came into it and, the, the punishment thing, like, you know. (Yeah you were saying that) I did something wrong, this is my punishment now that my life will have to be looking after [baby] and blah, blah, blah, and it was like, yeah, you did think it was going to be a burden and, and, like then you felt guilty about those feelings. (Em, em) Like you shouldn't, it's my child. I shouldn't feel guilty or think he's a burden or anything like that. But that's okay, like, you know, it's okay to feel like that. Although not all parents responded with anger, those that did feel anger, talked at length about their angry feelings. There seemed to be a need to give expression to this aspect of their experience. "We might lose him". Many parents described feelings of fear that  the baby would die: "It was like, oh now we might lose him." Parents recounted the "negative thoughts" that they could not "kick" out of their minds about their baby dying, using strong words of "frightening", "terror" and "terrified". This fear elicited strong responses, crying for many, and a physiological response for one father: F: When he mentioned that ... the baby might die, it really hit home with me. It's like all of a sudden I have to leave your office. I just got up and said sorry I have to leave right now, you know. And I was fine once I was out of the office and I went back in. It was just that initial feeling, you know, that something of mine is going to be taken away from me. I can't explain. I've never had that feeling in my life before.... my stomach wanted to leave my body. He said it was alright to feel like that but I felt, I don't know, ashamed, sick. It wasn't like I wanted to get sick. It was just like my whole stomach just decided that this is time to leave the  60  body now and I had to leave his office. I just couldn't (Really) stand being there. Upside down world.  The suspicion and its confirmation  constituted a throwing up in the air of the lives of these families: "it seemed that someone took the world and turned it upside down, you know, all of a sudden" or "like when the apple cart is upset and you can't handle it ... I was thrown out of whack and I couldn't handle that." One mother felt lost and helpless and a father talked about feeling "unravelled". Several parents remembered many thoughts and worries constantly going through their minds: F: Well I don't know it was just it would nicer if it weren't I guess, just lots of worries happening ... you know, different, different thoughts going through your head and mixed feelings. One father worried that his constant thinking about his baby's problem would cause him to be in an accident because he did a lot of driving for his work. Part of the "upside down" feeling state was related to "just a whole lot of feelings", not knowing what to do with the feelings and wondering if their feelings were normal. M: I felt a lot of guilt. (Em) That it was, cause I'm carrying him and it's my body that I've done this to him. (Em,em) I felt just terrible, I felt like the worst person on earth. (Em, em) And you get, you get scared, you don't know why and you get angry like F said to you because you don't know why this is happening to your baby. (Em,em) And at first I was, you know, you have all these feelings, and you don't whether they're normal or not, if you're supposed to have them.  61  "You don't know what it all means". From the time their baby's  heart problem was suspected to the time of confirmation, parents had an earnest desire to make sense of what happening to them, but as well were overwhelmed, feeling that this was going to be difficult to accomplish. As they waited for the echocardiogram, they remembered their many thoughts and feelings: "hoping that it wasn't what it was but..."; "cause you think oh maybe it's not so bad and then well maybe it's the worst and everyday, every minute your mind changes"; "they've got to be wrong. They would have noticed that, at the four month ultrasound" and: M: I kept thinking what if, what if he doesn't make it and what if they can't do anything. And he [her husband] was saying, "Believe it. You know they're going to be able to do something." F: So as soon as he mentioned that, we figured there might be a problem. But there was no way, at least I didn't think maybe a little hole or something, but they really don't tell you either way what the problem was. It's just left to your imagination. Not knowing what was going to happen to the baby was excruciatingly difficult for the parents to cope with and perhaps at the root of the other expressed emotions and responses. Once the suspicion was confirmed, some felt relief while others felt that they had not really taken in the information they had been given at the time of diagnosis. F: Our minds were filled with information in three days, you know, and when you, it's like studying for a test the night before  62  the test. You know, and the next morning you don't have a clue what's going on. Its all going around in you brain. The sense of relief that some parents felt as they heard about their baby's heart problem was related to being told that something could be done for their baby. M: To hear that they knew what it was and that they could do something about it was really helpful. (Em, em) And the book that they gave us and it said right in there, you know, what he had and what they do about it, you know. (Em, em) We thought well geez, they must deal with, you know know they had it written in the book you know. F: Yeah if they've got a book on it, (Yeah) there must be something they can do. M: So that helped a lot too. Even with this initial relief however, the parents were soon back to struggling to determine how the baby would be during the rest of the pregnancy. How would the mother be? How would the labour be and how sick would the baby be when he or she was born? Thus their work was laid before them as they faced the rest of the pregnancy; "I just didn't know what was going to happen to the baby and what was going to happen to me." Phase Two "Picking Up the Pieces": Diagnosis to Delivery  "Picking up the pieces", living through the rest of the pregnancy and anticipating the birth of their baby with a heart problem constituted the next phase of the parents' experience. Parents described this second phase with less intensity and detail than the other two  63  phases. The emotional responses of the first phase, especially those of sadness, guilt, fear, helplessness, and depression, were present, but seemed to come and go in a "roller coaster" fashion. As well, the uncertainty that characterized the first phase was present. Distinct to this phase was the parents' task of preparing themselves for what the baby would be like at birth. In the same way that the fetal echocardiogram confirmed the suspicion about their baby's heart, parents knew that true confirmation of the antenatal diagnosis would occur at birth, when the effects of the heart defect on the baby would become obvious. Consequently, the rest of the pregnancy, which ranged in duration from 5 to 23 weeks was spent trying to imagine what their baby with a heart problem would be like and trying to prepare themselves accordingly. For many, this phase seemed to last a long time. One mother who received news of her baby's heart problem at 34 weeks gestation said, "Oh for me it was eternity." For most parents, this phase was "okay" "until it got closer to delivery." Some parents were excited because finally they would know what their baby was going to be like, a boy, a girl, sick, very sick or stillborn. For many, the pregnancy seemed like it was dragging on and they wanted the birth to happen quickly:. M: Oh well, just you know sometimes I'm thinking oh, my goodness, I'm want to have this baby right way. Like I can't wait anymore. Like in my eight, eight months pregnancy, always telling myself.  64  F: You know we only just wanted to get it done and over with put it that way. M: So for me that's what it was like, just waiting. When is this day going to be. You know, and then when we went to [perinatologist] and I think it got later and later and then they decided that they wanted to induce because , you know he was full term. And I guess they figured he was big enough or whatever. For others, especially those mothers who were having their first baby, there was increased anxiety as the time for the baby's birth approached, related to the delivery itself and to their fears of the unknown: M: Harder in the aspect that, you, my first baby. I didn't know how long it's going to take. (Yeah) And what if I deliver at home and people aren't going to be here in case something, you know (Yeah) he needs resuscitation or whatever. Mothers feared the pain of labour -- "actually I was worried about pain for me" and two mothers, who had previous children but were having this labour induced, were fearful of the induction; "I had never been induced and I was scared about plus all this pain." Mothers also feared the effects of the delivery on their baby with a heart problem. Several women recounted their assumption that they would have a Cesarean section because of the baby's heart problem. They worried about the baby's well-being despite being reassured that there was no reason that the baby could not be born naturally. M: The doctor we had said, you know, there's no reason you can't have it natural (Okay) We want you to have it natural. It's better for the baby. It's better for you ... We were scared. You  65  know we were thinking, oh geez, we don't want to wait. We should ask him to give us a cesarean, you know, because it... F: Cause we don't M: Yeah we don't want to put him through that, what if he stops breathing half way down or you know whatever, F: Yeah (Yeah) M: But they just kept reassuring us (Yeah) Its better for him that way. M: Like see I thought they would want to do a c-section right way (Em, em) And then I thought well then they would give me a day, you know they we'd have that day to work up to, so because they told us no, natural and none of us could figure that one out because you know you automatically think with a heart problem that you can't go through the birth. One woman who had a previous Cesarean section was especially worried about the birthing process. M: Because they, and then because they want me to have a natural birth, you know, try it anyway. And, you know, I'm worried because maybe the baby have, you know a lot of stress inside, you know. They kept, they kept, letting me labour for so many hours. Parents also feared that they would not make it to the tertiary hospital where they were to deliver. M: Well, that was what I was so worried about, and I was so scared that I was going to go into labour here and then we're going to have to drive to [the tertiary care hospital]. Even though [the local] hospital is right there but I wouldn't trust them. The women also expressed fears that the physicians who knew them and their situation would not be available when they went into labour, "They told us over and over again, you know your file's here, you phone before you come in ... what would happen? But I was scared  66  that something is going to screw up here." One mother whose family physician and perinatologist may have been away when she went into labour carried a "sheet of the condition, some information, so that people would know what was going on when we went into labour". This mother had also planned to call the "heart team" when she went into labour, but as she asked more questions she realized that they would not need to be called that soon. Two of the mothers met with pediatricians prior to the birth of their babies so they too would be "on board." The Parents' Responses  Parents responded to the second phase in several ways: readjusting their expectations; wondering what was going to happen; focusing on the baby more than before the diagnosis or less than before the diagnosis; preparing for the worst, but hoping and praying for the best; seeking information; telling others about the baby's heart defect; and attempting to put their experience into perspective. "I was hoping ... that it would be perfect". Up until the time that  the suspicion was raised regarding their baby's heart, these parents like most other parents, were hoping for and anticipating a perfect baby. "It's just because when you're raised, you know, in a home you expect everything to be perfect when you have a baby." Even the mother who was convinced that her second child would have a heart defect thought about a perfect baby:  67  M: I had kind of dreamt that it would be nice if the child didn't have to go through the surgery stuff and all these appointments again .... I was kind of hoping that this wouldn't happen. That this child would be perfect. That's what I was hoping, for the second one, that it would be a boy and that it would be perfect. As excited expectant parents, they imagined what their baby would bring to their family and they dreamt about what he or she would look like and be like. "We were having a healthy baby girl" stated one mother who had amniocentesis earlier in the pregnancy. She and her husband anticipated a baby as healthy and perfect as their first child: F: We anticipated because our first-born is just a model of health. He's sort of what was off the scale growth. (Yeah) From the beginning of time and he's just, he gonna, you know it looks like he's going to be a natural athlete. He's perfect and he's beautiful ... we've been blessed with this one. Wouldn't it be, the probabilities are we're probably going to be blessed with another one. After the news of their baby's heart problem, this image formation continued, but now the parents were trying to imagine how the heart problem would affect their baby to come. Many parents imagined that the baby would die, this being their way of anticipating the worst. One couple wanted a boy, "ever since I can remember and so did [her husband], and we finally had our little boy and he's got a heart problem .... And so that, that threw another thing into it cause it was like oh now we might lose him." Most parents also spent considerable time wondering about what their baby would be like if he or she lived, thinking about "just all sorts of things". One father described his thinking about the baby as,  68  "Wondering, wondering whether he'll come out right away and there will be a major problem right away." One couple described their anticipated baby as follows: M: Well because they said he'd probably be blue, so I thought he, you know (Em, em) I didn't know. It was just that, they said he'd come out blue and that they'd have to rush him away. And they said they'd have, you know a thing to put oxygen on him so it was just like a horrible F: I figured that he would be M: A horrible sight. F: Tiny when he came out. M: I guess they sort of just said we're going to have to take him away so that was, you know that was a scary thought. You have this baby and you don't get to touch it or see it, and you know, they're just going to take it away. (Em, em) That was my main, my main trouble. One couple also found out that their baby had Down's syndrome and they vividly described their anticipated baby: F: Like what we've been waiting for all this time and now something screwed it up .... all the information we were finding out about Down's and stuff was telling us that she was carrying a monster. You know, that's the only way to explain it. Like I actually, during the time of delivery, closed my eyes. I didn't want to see what was coming out. (Really) I just, because I didn't know if something was going to come out with one leg or two legs or, you know, all messed up. I didn't know, they didn't tell us that, you know. And the more they probably could have tried to tell us, the more they made it worse. Information from the various physicians was the greatest factor influencing the parents' images of their baby. As well, their own experience, attitude and thinking helped form the images. One couple was given a grave prognosis by the pediatric cardiologist. "They said  69  ten percent chance of survival," recounted the father. As well, the mother was told by one of the physicians other than the cardiologist, that the baby could be stillborn. Her constant experience of the baby kicking made it hard for her to believe that the baby would not live and this positive image was reinforced by her family doctor when he would check the baby's heart rate. She described her thoughts about her anticipated baby as follows: M: You know because I knew that he has heart problem what would he look like when he comes out? Is he going to be like really blue or, you know, or how is he breathing? Like because the doctor, like every time [family doctor] checked me right and he said that it doesn't look like this baby even has a heart problem because his beat is really good. You know, every time he listen he's like, you know, and he said well, the baby's heart beat is good, and that's why he couldn't figure out what, you know. So, so help me I was, I was a little bit scared there too, you know. How about if it's going to be stillborn or you know, I always thought that even from the beginning like but then I didn't. You know, I know he's going to be, he's going to be strong. Because he's always moving ever since I was four months from the day he was moving everyday. So I knew, you know, there's no, there's no day that he won't move everyday he was moving so and I'm always happy. Parents struggled to make sense of what they had learned about their baby's heart problem: M: We just didn't really kind of hear. You don't know if he'll be fine. (R: Yeah.) But we didn't know at the time, you don't know what all that means, (R: Em, em.) Cause you obviously don't, on the ultrasound it's just black and white and you don't, you don't know what means what. M: Well I didn't know what was going to happen to the baby and what was going to happen to me. Cause you're going through all  70  these tests and you don't know what he's going to be like when he's born. Also. like, like the doctor told us, he could die, he could be stillborn and stuff like this and it was like were just being fed all these [pause] F: Negative. Parents would often recall the factual details regarding the heart problem and then would try to figure out what this would mean for the baby. M: ... and then explained to us like there were two holes in the heart and the valve isn't closing. And we were worried about when he was born if he would drown because with the constant flow of blood into the lungs. And like I didn't even, before he was born I didn't know, when he is born can you pick him up? Can you do anything with? Now he's you can throw him in the air you know. He does anything, like, you know, it's not a big problem anymore. But at first it was really scary. Like, you don't you think any, if he cries a little, he's going to have a heart attack. He's going to die on you, you know if he chokes a little or anything, he's going to die, but that's not true. Some parents adjusted, or downgraded their expectations, as they anticipated what their child would be like. One mother, who for a time was convinced that her baby would die, recounted: M: And, it was decided at that point in my mind ... that it didn't matter what, it didn't matter what was wrong with her as long as we got her, got our prize, saw our baby at the end, in the end. As much as the parents tried to imagine what their child would be like, they continually struggled with the fact that their images of their baby were just that, images. No matter how much they thought and wondered about their baby they did not know what would really happen when their baby was born.  71  "But what's going to happen?".  M: Yeah because you didn't know what was, what was going to happen. There was just so many things that we were fed that could happen. This could happen, this could happen, this could happen. It's like, okay, but what's going to happen, like, you know, and now it's, you know. Uncertainty for the parents continued throughout the second phase. "What will happen to the baby?" was largely due to the lack of conclusive information about how the baby's heart defect would manifest itself. M: And, he says, they're not sure but, like oh the heart chamber, is it the heart chamber is not developed. Maybe, you know, like they have to do something right after birth or have an operation. M: They weren't sure that she was going to come out, when she came out whether she was going to come out pink or blue and explained what would happen if she came out blue .... was explained that if, in the event that, she came out blue, if she could be stabilized, she would go for surgery and it would be like twelve hours away from the birth before anything would happen. M: They said that the right side of her heart was slightly enlarged and that, you know, sometimes they see that in normal babies as well and, it didn't mean that there was anything wrong but it was possible and that it could mean a coarctation and, they couldn't really tell until she was born. In addition, the multiple sources of medical information made things worse: M: It [the information] came from different doctors. It came like every doctor seemed to add little bit worse to the pot, you know. It was really, really terrible. [The perinatologist] gave us most of the  72  information, but then it was my doctor here who said well, you know, you should be prepared for, he may be stillborn and all these things. And then it was I guess [the perinatologist] said he might need the surgery like within twenty-four hours, depends how bad the heart is, like when he comes out and breathes on his own. So it was like we didn't know what to expect when he came. "Kick, kick, kick". Parents responded to the challenge of living  through the rest of the pregnancy knowing that their baby had a heart problem by focusing on the baby. The baby's movement was reassuring and a constant reminder of the life and the potential that was present, despite the heart problem that had been diagnosed. M: Knowing that he had a heart problem, but I can still feel him kick .... I can't believe there's something wrong with him like, you know, and he would just [motion of baby moving] [laughter] exactly. Just forever going. One mother stated that she "never really worried". "Everyday I go like this [touches her belly], then it just kick, kick, kick, so I know he's strong." Her husband would remind her that "you're supporting him while he's inside you." She conceded that the baby might not be as strong when he came out, but she felt his kicking every day and so would say "well I don't know, we'll see." Focusing on the baby also involved doing things that would be helpful for the baby. For one mother, this meant trying to rest more and "not be stressed" so that the baby could grow and develop. Another mother, with gestational diabetes, did all she could to control her condition, "we had one problem. We didn't need another is what I kept thinking." Another mother believed that her working hard  73  would make the baby work hard; "like when I know the baby have a heart problem, that's when I, I think of work like I work so hard so that he gets more stronger." Much to her friends' dismay, this woman took on a strawberry picking job so as to work hard on the baby's behalf. When her baby survived the 90% odds against him, this mother wondered if she had succeeded in making him stronger.  "Scared to grow too attached". Unlike mothers who were constantly reminded of the baby by the movement and kicking, fathers did not have this ongoing reassurance to help them through the difficult time following the antenatal diagnosis. One father, who had been ecstatic when he found out that he and his wife were expecting their second baby and had always interacted with his unborn babies, found this difficult to continue after the antenatal diagnosis: F: I was so scared to grow too attached, so that I would have to give it up when he was born. M: And I get, I always get mad at him, like when I feel, honey, look, look, and then he's like, he didn't want to touch my stomach. F: With him [points to older child] M: With him every minute, he touch him, and that's why I was so mad at him you know. I say who cares if the baby doesn't make it, you know, at least you feel the baby's moving inside me. So I'm always mad at him. F: I was very scared to get, you know, really attached. Continuing with baby preparations was also difficult and some parents put things "on hold". "We actually stopped buying things for the baby" said one father, "we never even thought about the baby's room." His wife cancelled a baby shower saying, "I didn't want that."  74  Some parents just did not want to talk about the baby and what was going to happen, even though they were thinking about it constantly, "You know cause it was too scary to talk about it". "We prepared ourselves for the worst". Closely related to the parents' described efforts of not getting too attached or involved with the anticipated baby were their accounts of how they prepared themselves for the worst. M: Right, and that was the other thing, on that point I had told people, both doctors, obstetrician, my family doctor, I had been preparing myself for the worst, while I was going through this before her birth. They were encouraging me on that point, saying that's probably best. And the worst to me was the fact that she would come out blue and she, if she could be stabilized she would be prepared for surgery at that time, So, and that was how I was going, preparing myself for the worst. One father summarized his rationale for this response: F: We prepared ourselves for the worst case scenario...We figured that would be more positive because like I said to M, I go we're ready for the worst and anything better is going to be good news. If you're expecting really good news and you set yourself up for that (Em, em) then it doesn't happen. It's a disappointment, but we just had a feeling that no, just, I don't know it was just both of us agreed to like I say. Preparing for the worst took the form of preparing for the possibility of the baby dying. One couple talked about quality of life related decisions, holding the baby after death, and organ donation: F: I didn't want it to sneak up on us, like when the baby was delivered and not have, seeing those organ transplants we just thought well if the worst comes to the worst and he can't make it, we'll donate his organs.  75  One mother wondered if she should be making funeral arrangements before the baby was born. Her husband followed her comment with: F: I actually hung onto the moment he was born and the doctors were wrong. I was actually, I actually believed that the doctors were wrong. You know, although they had the facilities to prove me wrong, I actually held on to that belief that they could be wrong .... I don't know I just thought they could be wrong. These contrasting responses reflected the experience of many couples for one partner to lean more towards preparing for the worst, while the other partner thought about and hoped for the best. "Think positive".  M: I kept telling him you have to think positive. You know, because then it helps you when you do have a problem every time. F: When you're in a situation like that it's darn hard though to always think positive, you know, kick those negatives. M: He kept saying, you, think, positive, think positive, just sort of the positive thinking. F: You're always getting negative thoughts in your head. F: Keep a positive attitude towards it. M: Yeah F: Hope for the best M: Every time I tried to say what if, he'd say, you know, don't think that way, and then it was sort of conversation was ended. One mother's positive hopes for her baby were met with her husband's "don't be so sure honey". She recounted her response as "you will see, I said, you watch it, this baby is going to make it I told  76  him." This same mother stated that she believed in miracles. She was not the only parent that prayed and hoped that their baby would be okay. "Praying that he'll be okay". Many parents prayed and hoped for a  miracle. One mother prayed, "Oh please, could we just even bring him home." "Just pray, that's all I do" was one father's comment. Another mom said, "every night I was crying and praying that he'll be okay and you know, the heart it will develop and maybe the doctors, you know thinking of the doctor must be mistaken. One mother remembered the perinatologist telling she and her husband, "if you guys believe in miracles, believe it and I said I believe in miracles myself". After her baby was born she remembered a doctor saying "so it looks like your baby's going to make it." She recounted her response as, "So I said thank God, I said, I've been praying for that from the beginning I told him." For one couple, the grandparents were the ones hoping for a miracle. F: All the parents, I remember my Dad and my Mom they kept on thinking oh no, no, you know, just hope and you watch they'll be nothing, you know, remember they were convinced that M: Yeah they thought that all, the second child F: There's a miracle here. Hopeful that something would change. "Asking a million, zillion questions". Parents also responded by  seeking information. Many parents did not "take in" the information provided at the time of the fetal echocardiogram and so many of their  77  questions did not come to mind until after the appointment. These questions were raised in follow-up appointments with their family doctors and obstetricians. For the mother whose baby had CHD as well as Down's, her information seeking was more related to the Down's syndrome, "so I did a lot of running around and I, I didn't really ask too much about, about his heart cause it was mostly the Down's I was worried about." One couple said they were relieved to have the suspicion confirmed and were glad to receive information about what could be done for their baby's heart problem, but at the same time remained guarded in their optimism. F: I mean it was, I mean we still didn't have high expectations of him doing well, actually we were thinking. M: We thought the worst. "We broke it to everybody". All parents told their family and friends about their baby's heart problem. Most responded in a supportive manner, with assurances, understanding and practical support. Benefits and drawbacks of pre-existing family situations were magnified during this period. One mother, who had recently moved away from the city where her parents and sisters lived, talked at length about how much she missed her family. Since her move away she had wanted to move back and now she longed even more to be closer to her family. One mother's father died prior to the news of the antenatal diagnosis and she cried as she related how much she missed him, "He never got to see her. He knew we were having a girl."  78  Family members perceived as non-supportive were described in terms of the circumstances that contributed to this: "Oh my family, we can never count on my family at all", "because my Mum is going through a lot right now with my step dad, you know" and "her mom's got problems right now too so." Putting things into perspective. Parents tried to make sense of  what they were experiencing. They described how their view of life influenced their experience. The woman who was praying for a miracle said that "where I came from we believe in a lot of miracles right ... it's part of the religion." One father stated that "if it was meant to happen that's what would happen anyway." Another parent's view was, "It's in God's hand, what will be, will be." The philosophy that another father lived by was as follows: F: There's no guarantees, I mean how do you know. I think no matter what somebody says, until you have it, until you have your child, it seems to be that, that they can't, there is no crystal ball of course, they can't say that, that if you have a child that there will be no problems because of the, the odds are just have to, if you want to have a family you have to take your chances. One father described what he tried to relate to his wife: F: That's one thing I've explained to her when there's a problem, it's, there's nothing we can do and it's just like a trial or a test for us, and we can handle these things. Several parents' view of life was summarized by this father's account of "comparative analysis":  79  F: So ultimately I firmly believe in a comparative analysis of your problems (Em,em) You know your people are down, we all get down in the dumps and get the blues, but I always say don't be so self well not self-centered but only use yourself, look at other people and their problems and then yours become at least manageable. (Em, em) And we really have no problems compared to others. Another parent found beliefs related to everyone having problems in life helpful. M: See the way I think about our life is like everybody has problems. (Em, em) And you know you've got all sorts of diseases, all sorts of things, health problems, everybody's got to try to cope with what they have and they say that's life ... And I just found well, you know, our problem is you know we have no problem, otherwise so it's just the kids they have the heart defect and that's our, you know, some people have other problems. One father's summary comment reflected what many of the parents intimated about their expressed beliefs and values, "And that's the way we're raised so I think that makes a difference." Phase Three "He Cried": Birth to Relief Phase three began at the onset of labor. Five of the eight women in the study had labour induced. This phase ended with the birth of the baby and the parents' discovery of how the baby they had anticipated compared with their real baby. Parents experienced labour in one of two ways. They were either completely aware of the baby or not at all aware of the baby. Parents vividly recounted their initial responses to the baby. These descriptions were told in almost the same  80  intense and detailed manner with which they had described their experiences in phase one of the echocardiogram itself and their reaction to the news of the heart defect initially. Their vivid recollections of seeing their baby for the first time were verified in many of the second interviews where parents recounted word for word their responses despite several months between interviews. For most parents, sight of their baby after birth brought much relief; things were better than they had expected. The Labour "I thought about the baby". For some mothers, the onset of  labour escalated their fears regarding their baby's well-being. The woman who was admitted from her clinic visit related her feelings of panic when her waters broke several hours later. She recounted her experience in a loud and anxious voice. M: Yeah the water flows and then I'm like, you have to do something now, my baby got a problem, you have to do something [shouting]. You know I'm really scared, I'm very scared (Yeah) I says call my doctor and, and, you know call the, whoever the specialist because my baby has a problem. In the second interview she recounted how scared she was during her labour and how she felt that she was the only one worrying about things: M: But you know like the nurse says oh you're only seven, seven centimeters or something, you know, like they're not really that worried. (Yeah) So I'm screaming that you know call the doctor and there's something wrong with my baby and they have to do something right away. So, so they run and well I'm just  81  scared you know, like I'm so scared, and like I might deliver in that room [on the ward], you know, and it was just, and the doctors doesn't know what to do and the nurses doesn't know what to do with my baby. So I was scared. This woman's baby was born within one hour of her waters breaking and despite the intensity of such a quick delivery, she talked about how aware of her baby she was: "my baby's alive" and "I didn't want him dead cause he's kicking" and "I want him to live you know." She could think only about getting the baby out so that he could receive the care that he needed. She recounted this aspect of her experience several times during the interview. M: Okay one thing I , I, well it's really painful you know, all you have, you know, all you think is just give a big push to, you know, just, you know, like let him out and do something right away, cause, you know, that's the one thing I have to do is just push hard and let the doctors see him and you know and look what's the problem. M: Yeah, you know, what I'm thinking is just to push right away, like, you know, to help to, help him right away because, you know, I know there's something wrong but I really tried, that's why I have a quick labour because, you know, I did, you know, all I can do to help him right away. M: You know delivery so I says my goodness you know I have to be helpful, you , I have to push and push, and push [says loudly] like really hard so I'll have him right away cause I don't want to, you know... So I did all I can. One of the mothers who had thought a lot about the possibility of her baby being stillborn -- "like I always think that he might be stillborn when I have him because, you know, the doctor kept saying that", was aware of the baby's kicking while she was in labour; "when I was laying  82  on there like, in labour the baby just kick, kick, kick, so I knew that, you know, he's strong." One mother said that she was especially aware of her baby during her time of pushing. M: I remember when I was ready to have him ... when you get contractions I was trying not to get too dramatic during contractions like [gasping to demonstrate effort] the pain, like just keep calm, and then when that, when it was time for him to be born, I know with [daughter] and [other daughter], when you have to push I just screamed blue murder and with [this baby] I didn't. I tried not to scream so it wouldn't be as big as shock as it was already going to be like for. (So you were thinking about him?) Yeah, yeah. I didn't want to, you know, I didn't want to be screaming and he's got heart problems and scare him like, you know. (Really, isn't that interesting.) And like, you know, just trying to keep as calm as possible, just to have him and it's worked it was pain too, but it but, so I tried to do all those things. One mother who had a previous child with a heart defect said that she did not do anything differently during this labour because of her knowledge of the heart defect. M: No, nothing at all, just trying to get this baby out as fast as possible (Yeah) Get it over with and I was happy, excited... It's exciting again because you're trying to figure out if it's a boy or girl. One mother wanted everyone to know about the baby's heart problem and her own diabetes. This mother, who had probably done the most preplanning for labour and delivery, was amazed at her inability to provide necessary information to health care professionals when she arrived at the hospital to have her baby. She had anticipated  83  being able to advocate for herself and her baby once she got to the hospital: M: I thought I had lots of time to phone, to just say, okay, this is my situation, here's our papers, here's our, this is our kid, nobody, my doctor might be away, the obstetrician might be away, everyone might not know about her [the baby] here. Here's the situation, here's the paper, here's you know. (Em, em) You know be alert. You know, I need, I'm high risk. I need a high risk room. "There was none of that," she recounted. She was in "aggressive labour" when she arrived at the hospital and although she was aware that she needed to communicate information about her diabetic condition and her baby's heart defect to her caregivers, she was not able to do so: M: They didn't know I was diabetic. I didn't, I was in a low risk room, cause I was in high risk before, I know the room .... so I remember, oh, her asking me who my doctor was and I was concentrating and I was in labour and I thought man, I've lived in this place, you guys don't know who my doctor is. This woman was not "in the mood" to answer questions and although she was going to "be so prepared ... it just was not happening." In the end, "it all came together, everyone was really cool." Concerns regarding being known and recognized for the risks they represented were greatest for the women who were not induced, but who arrived at the hospital in labour. Women who were induced expressed relief that they no longer had to worry if the right people would be present at the birth. Induction meant that things would not  84  be left to chance. Knowing that the right people would be there was comforting for parents. "I didn't think about the baby once". In contrast to the women who thought about their baby during labour, several women expressed surprise at not thinking about the baby during this time. These women, in anticipation of labour and delivery were anxious about whether the people who knew about their baby's heart problem would be "on alert". As they reflected on their experience, they seemed puzzled about their lack of attention to the baby during labour. M: I don't know I sort of, was it the fact that I was having a baby? So it kind of, I guess I kind of, I blocked it out. Because the doctor that we did have said, you know, and focus on having a baby and [parent support contact, she told us a lot, you, don't forget you're having a baby, you know. (Yeah) You've got to also remember that. ( Yeah) I think while I was delivering I just sort of put everything out of my mind. (It's almost like at that point it's birthing the baby that is what) That's all I worried about, yeah, exactly. Another mother talked at length about how she did not think about the baby and her surprise grew as she continued talking: M: I never once thought how the baby was doing. Not once, I was so, I guess so into the labour and just like, you know, trying to get the baby out. I never thought at that time that there's a problem. I guess because I knew they were monitoring the heart. M: Yeah cause it was somebody, I think someone asked me. You know well God, weren't you worried about how [the baby] was doing while you were in delivery. And I said you know I never even thought about it. I think cause I knew F was right there. F: I was watching the monitor the whole time.  85  M: Now that I come to think of it like I don't know why I never asked about getting the epidural and things like that. What would that do to the baby? It never bothered me at the time, but I think now if I think about it I don't know why I never asked, you know, could that cause a problem with him. Unlike their wives, fathers thought about the baby; "I kept on looking over at the monitor just to see how his heart was doing and his heart was doing great, it seemed like." F: I think I focused on the monitor that they have, like the baby's heart beat and that and they tell you what their rate is supposed to be and I watched it pretty well the whole time and you know. As labour progressed, one father was less focused on how the baby was doing; "Well I think when he was delivered, oh I hope everything's going to work out and then, I don't know, I fell right into it, let's get this baby out, you know." The Birth  The birth of the baby was when the parents realized what their anticipated baby really was like. The two couples with children with heart problems experienced outcomes that were worse than they had expected. One baby had an additional congenital anomaly that had not been anticipated and required immediate medical attention; the other baby had to have heart surgery within hours of his birth. Their previous child had not required surgery until she was older and they had assumed the same would hold true for their expected baby. For the rest of the couples, the birth of their baby was when they found out that their "worst case scenarios" had not materialized. Their  86  bright exclamations of "He cried" reflected their delight that their babies were better than expected. Despite the fact that several of these babies required immediate attention and transfer to an intensive care setting in the adjacent pediatric hospital, the parents were nonetheless pleased with how well their baby seemed as compared to what they had anticipated. "He cried". Having prepared themselves for the worst most  parents were surprised that their baby cried at birth. Many assumed that the baby would not cry and so had vivid recollections of that first cry. M: Then he, and then I, and then it made me happy. That's when he came out and he cried. (Okay) That made me happy like because I knew that, you know, that he's not dead or anything. F: When he was born, when he cried that's what you know brought a little relief. That brought a little relief ... like I mean we'd thought about it, you know, like what we wondered, will he cry like a normal kid? And we always thought ... like that he wouldn't, but he did. M: He did, so I, I just went Yeah [thumbs up action]. F: No it's nice to hear him crying though. That was a nice sign cause at least he's got a voice now. M: Yeah. F: If he wasn't crying I think I would have been a lot more worried. One mother was so surprised to hear her baby cry that for a moment, she was sure the doctors had been mistaken about the heart problem; "they must be mistaken or something, you know, like cause if he cried, he's okay."  87  The mother of one of the babies recounted in a surprised tone, "Yeah I remember, yeah, he cried [surprised sound in voice]. I remember he cried." As this couple remembered the time of delivery the woman asked her husband, "did you notice if he was blue, I never asked". He answered that he did not notice because it was quite dark and then right away again the mom said, "Oh yes, yeah, I just know I hear him crying." Another couple recalled their baby's cry, his colour and how they felt as they could now finally see their baby and how he was: M: Oh it was great he cried. They slapped him on my chest. F: You know we weren't as worried. He didn't look blue. (Yeah) His color was pinkish, the doctor was saying oh he looks super, you know. M: And I got, you know, got to have him for a good five minutes. F: Yeah he poohed all over the nurses. M: Yeah he did. (Oh really) Yeah he did his ordinary thing. They were saying wow he looks super. (He did all that right away.) F: Yeah. M: ... So we weren't as worried. Like we were still very worried, but we're going wow, you know, he's, we just kept saying it, he's going to do fine, he was, you know, he was pink, he wasn't blue and he was breathing and screaming. Some parents talked about their amazement with how "normal" their baby looked and sounded as he cried. Being able to hold their baby, even if for only a brief time, was reassuring for the parents, "and so when they did that [gave her the baby] I thought well, he must be super you know. It was a relief." One father was asked if he wanted to take a picture of the baby as soon as he was born.  88  F: It caught me off guard cause I thought it was going to be sort of like scoop and run sort of thing. M: Yeah. F: And no so I started fooling around with that thing there. I didn't have my lens cover off my camera [laughter]. They're going, "Take your lens cover off." I was all excited. (I guess so) I didn't expect this. (That's right) So I had the camera, but I wasn't really expecting to be able to use it. I thought he'd be gone before. (I guess part of that's preparing yourself for the worst.) F: Yeah exactly.  "He's going to be okay. One couple had visions of "a monster" and the father closed his eyes during the delivery because he "didn't want to see what was coming out." The birth of their son immediately dismissed their fearful expectations; "then when it was all over I thought well, it's no big deal. He's healthy, you know, he got ten fingers, ten toes .... He was quite perfect." His wife remembered that she "just fell right in love with him." "He's not what we expected, you know," she stated and: M: He was born and it was like, you looked him and there's nothing wrong with him, like he, you know, he was fine on the apgar remember the doctor .... one of the guys who takes the baby afterwards I guess, one of the nurses he was putting oxygen onto him and the doctor come over and said, does this baby need oxygen and he kind of looked at him and the doctor said does this baby need oxygen, he said well, no, he says well then why are you giving him oxygen? Although their expectations regarding the Down's syndrome were added to this couple's task of preparing for the birth of their baby and thus their responses at his birth, they, like many of the other couples, were amazed at how responsive their baby was at birth: "He's  89  screaming. If he's that sickly why is he sitting here screaming his head off, you know. Why is he kicking and have you know, just being like a normal baby like [older daughter] was." Despite "feeling good" about their baby's vigorous condition, this couple remembered that they got some pictures taken of him because "he could leave, go upstairs and die .... Yeah that was still in our head." They were still preparing themselves for the worst. This woman wondered about the information that she had received and its influence on her expectations regarding her baby. M: Because like he [perinatologist] said too, he didn't know. See they just go by, statistics I guess, like just, what they're supposed to be like and this, this, this. (Em, em) But they might not actually be like that so maybe if [the baby] was worse I'd have to be all psyched up for him and if he's better well then that's great then I, you know, I could kind of go whew, like, you know, he's not so bad and feel good which I did. Another couple who had been prepared for the possibility of their baby requiring immediate cardiac assessment and emergency surgery, knew as soon as their baby was born that she going to be okay. The mother recalled, "So out, well, I mean all I know is the baby came out and I got her right away and she was wonderful." She remembered that her apgar score was nine and said: M: You can't get any better than that. I don't think they give tens [Laughter] so then I knew we were sailing from there and it was wonderful, just terrific so they did take her away and I got to have her for an hour.  90  The father was as convinced as his wife of his baby's good condition, remembering that "the baby came out nice and pink, she wanted to suckle, she was vigorous", "she was beautiful" and she "looked great." At the time of birth the meaning of their baby's heart defect was finally revealed. "He's not a creature, he's a little baby" was the most dramatic expression of the meaning revealed, and although this comment came from the father whose baby also had Down's syndrome diagnosed antenatally, his response vividly illustrated the revelations that each parent experienced at the birth of their baby. "Scoop and run". Several couples recounted that their babies were taken from the delivery room within a short time of birth. They had little recollection of what their baby looked like. One mother could not recall having seen her baby, but remembered thinking, "He can't make it." Another woman remembered that "he was a little bit blue" and "I hardly even see his face. The only time I see him, his foot was turning blue though." She remembered that she was allowed a quick glance at the baby, but that she was "too tired." Her husband took pictures of the baby "right then and there, bang" and "got to see him for a couple of seconds and then they ran him over to the hospital." Despite the "scoop and run" nature of several parents' experience, they still remembered feeling that their baby's condition was better than they had expected because he was born alive. Even though their baby had to be whisked off to the pediatric hospital, they were relieved  91  that they had heard their baby cry, this being more than they had anticipated. Analysis of Central Concepts  The experience of parents who know about their baby's heart problem antenatally has not been described in the literature. The central concepts identified in this study are uncertainty, grief and maternal tasks of pregnancy An analysis of these concepts enhances our understanding of the findings. Uncertainty  The principle work related to the concept of uncertainty has been done by Mishel and is grounded in her experience with hospitalized adults. Uncertainty is defined as "the inability to determine the meaning of illness-related events .... the cognitive state created when the person cannot adequately structure or categorize an event because of the lack of sufficient cues" (Mishel, 1988, p. 225). In this study most parents were unable to determine the meaning of their baby's heart defect and therefore, experienced uncertainty. Mishel (1988) describes three components that contribute to uncertainty: symptom pattern, event congruence, and event familiarity. In this study, parents' inability to make sense of their situation can partially be explained by a symptom pattern not being present. The only indication that their baby had a heart problem was what the cardiologist told them about the fetal echocardiogram  92  findings. There was no visible pattern of symptoms to help the parents determine what the heart problem meant for their baby. Additionally, event incongruity was present as they focused on their baby who was kicking and moving. What they were told to expect about a baby with a heart problem was not congruent with their experiencing a lively, growing baby within. This prevented parents from making sense of what they had learned about their baby and resulted in uncertainty. Lack of event familiarity also contributed to their uncertainty. None of the parents had experienced an antenatal diagnosis or knew of others who had such an experience. They could not rely on their previous experience or knowledge as they tried to make sense of what they were experiencing. For parents who had previous children with CHD, the outcome of the event, a child with a heart problem, was familiar for them. This helped decrease some uncertainty because they assumed that the baby would be similar to their other children with CHD. Having a sister whose baby died of a heart problem made one mother's antenatal diagnosis of CHD feel painfully familiar and decreased her uncertainty. This instance, however illustrated that uncertainty is not inherently a dreaded or desired state until the implications of the uncertainty are determined. The implications of decreased uncertainty for this couple initially were that they were sure that their baby would die and that they could begin to grieve the anticipated loss of their baby. As time progressed and they gained  93  familiarity with their own baby's antenatal diagnosis and learned that there were treatment options available, their uncertainty again decreased, the implication this time, being that they were more sure that their baby would live. Mishel (1988) describes several variables that influence the components contributing to uncertainty: cognitive capacity, education, social support and credible authority. Cognitive capacity refers to the information-processing abilities of the person. Immediately following the echocardiogram when the parents received information regarding the diagnosed heart problem, the stress of the situation restricted the parents' ability to take in and remember what they were told and thus, use the information to make sense of their baby's problem. One mother was not able to put into words her recollection of the time immediately after the echocardiogram. Her response was, "I don't know. I was a mess." Uncertainty, therefore characterized the first phase of their experience from suspicion to diagnosis. As the news of their baby's heart problem began to "sink in" during the second phase of their experience, parents' cognitive capacity was less limited and they were able to process information they received and their uncertainty decreased. Another influencing variable, social support, "acts to prevent uncertainty in various life crises by supplying feedback on the meaning of events" (Mishel, 1988, p. 228). Many parents described the role of support. One woman found it helpful to talk regularly with her sister  94  who worked for a physician; "she had some medical connections ... and she can help, you know, like if I'm really down at the time so maybe she might help me." Another father talked about his mother, an "ex nurse": F: ... and she says it's amazing what they can do. She worked in a children's hospital in [name of city] (Really) So, I know she worked with a lot of sick kids and she said you know they're really good these days. M: Yeah F: They're quite capable. (Yeah) Things are really improving. (So that was helpful for you.) M: Once they, to hear that they knew what it was and that they could do something about it was really helpful. Two parents indicated that helpful sources of support and reassurance were parents of children with heart problems or other health problems. "Credible authority" is an additional variable identified by Mishel (1988) that influences uncertainty. She argues that if a person trusts the health care provider because of the care received or because of the provider's position of power, there is likely to be less uncertainty regarding the illness-event in question. Although there was evidence in this study that the parents trusted the physicians involved in the antenatal diagnosis and ongoing care, unlike in Mishel's work, their uncertainty was not decreased because the anticipated outcome of the baby's heart problem was not known by any of the credible authorities. If anything, each physician provided his or her own anticipated outcome and the differences in opinion contributed to the parents'  95  uncertainty. Closely related to this aspect of their experience was the ways in which parents sought information. Information seeking is a coping strategy used to reduce uncertainty (Mishel, 1988). As parents' sought information about their baby's heart defect in the antenatal period, they better understood the problem that they were facing and were more able to make sense of their experience. Access to information about the baby's heart defect depended on where the parents lived and who they saw for follow-up antenatal care. Those in outlying areas saw their family physician for follow-up, while those in the city of diagnosis were usually seen by the perinatologist at the tertiary hospital where the antenatal diagnosis was made. Some were told by their family doctor or perinatologist that their baby could be stillborn. This information, as provided by a credible authority, in fact had the potential to decrease uncertainty in that they would be certain that the baby would die. Discussion of uncertainty appraisal is necessary to further understand parent responses. Appraisal of Uncertainty  Mishel (1988) argues that because the experience of uncertainty is neutral, neither a desired or dreaded state, an appraisal of an uncertain situation is necessary. In this research appraisal was an ongoing process throughout the first two phases of the parents experience of knowing about their baby's CHD antenatally. Appraisal results in parents deciding if the uncertainty of the situation is good or bad, "a  96  danger" or an "opportunity." When the perceived outcomes associated with decreased uncertainty are worse than the perceived outcomes associated with remaining in an uncertain state, the person may attempt to preserve the uncertainty that he or she is experiencing. In such an instance Mishel would tell us that the uncertainty is appraised as an opportunity. This process was evident in parents who remained optimistic about the baby's outcome, even when they were told that their baby could be stillborn by a credible authority. Their source of optimism stemmed from their choice not to take in what the doctor was telling them by, for example, not discussing the possibility of a stillbirth and/or firmly believing that a miracle could occur. The parents remained uncertain because the certainty of their baby being stillborn would not allow them to hope. In situations where parents appraised that a full understanding of their child's heart defect would result in them being in a better state than their current uncertain state, the parents sought information regarding the heart defect. Many discovered that there were treatment options for their baby and that there were children with heart problems alive and enjoying life and therefore, they could be hopeful about their baby's outcome. As uncertainty is a central explanatory concept to parents' experience it enables us to understand the parents' experiences which are not isolated occurrences unique to them alone. The parents' experiences reflect the experiences of others who have come to terms  97  with the meaning of an illness event in their lives. The dilemma faced by parents receiving an antenatal diagnosis, is that they are given information about their baby's heart problem, but are not able to act on the information until the baby is born. Therefore, parents embark on a time of waiting, wondering and trying to make sense of what they have learned about their unborn baby and what it is that they are to expect when their baby is born. While the concept of uncertainty and the ongoing appraisal throughout the phases of the parents' experience of antenatal diagnosis of CHD has been discussed in terms of Mishel, further understanding of the parents' experience is gained through comparing Matthews' (1990) work with this study. Although Matthews' study included mothers only and this study included parents whose children were well at six weeks, similar findings between the two studies included the parents' feeling that the waiting for verification of the suspected anomaly was too long, whatever the time frame was, as was the wait for the baby's birth. The mothers in Matthews' study and the mothers and fathers in this study also all asked "Why me?" and "What did I do to make this happen?" The other major similarity between the two studies is the description of the experience in terms of several phases. Matthews (1990) uses "Uncertainty" to describe the first phase of her Expectancy of Loss model. The implication that uncertainty characterizes one phase of the experience only, does not concur with the findings of this study,  98  in that most parents who found out about their baby's heart problem antenatally experienced uncertainty until their baby was born. This discrepancy in findings could be accounted for in that all babies in Matthews' study died. It is likely, although not stated, that the women were informed of their baby's inevitable death and so were able to determine the meaning of their baby's antenatally diagnosed problem. The anticipated certain death of their baby may have accounted for uncertainty not being a part of their experience following suspicion verification. This is similar to one couple in this study who for a time were certain that their baby would die. This couple, however, experienced uncertainty as the pregnancy progressed because information gained included the possibility of other outcomes, as did their own positive thinking about the baby's possible outcome at birth. This ongoing appraisal and reappraisal of uncertainty was reflected in parents preparing themselves for the worst while at the same time hoping for the best. Although Matthews (1990) does not describe the subsequent phases of the mothers' experience in her study in terms of uncertainty, she found that the time from the antenatal diagnosis to the birth of the baby was "overwhelmingly characterized as a hope/no hope cycle". Presentation of Matthews' "hope/no hope" concept to parents in this study's follow-up interviews elicited immediate responses of recognition and understanding. Their experience was captured by this phrase and is perhaps equivalent to the ongoing appraisal and reappraisal of uncertainty that occurred because  99  the outcome of the antenatal diagnosis could not be determined until the baby was born. The anticipated outcome was a key influence on the parents' experience of antenatal diagnosis. The mothers in Matthews' study seemed more sure that their babies would die than did the parents in this study. Their responses of wanting the doctors to "fix it" or '"get rid of it" (p. 171) were not part of the parents' experience who found out about their baby's heart problem antenatally. One woman, when she found out about her baby's heart problem, did feel guilty that she had not had the amniocentesis that had been offered her earlier in her pregnancy: M: And I didn't take that so the first thing I felt is I'm guilty cause I should have the test, maybe they will, you know, early, they will find it earlier and, you know, like I have to decide whether I'll terminate it or... Although the amniocentesis would not have revealed her baby's heart problem, this expression of regret may have reflected her desire that the defect would have been diagnosed earlier in the pregnancy when termination would have been an option. Two couples were offered the option of termination when their baby's heart defect was diagnosed. One couple referred to this option as "extermination". "They didn't want to say abortion" was the mother's comment. Her husband went on to say, "They don't use that [the term abortion] anymore, but I don't care. We couldn't live with it, you know, like we could never do that."  100  One mother with a previous child with CHD was diagnosed at 17 weeks and recounted the termination option, "They asked me to abort." Her husband was quick to correct her, "No, they offered [said with emphasis] that to you". This couple anticipated the outcome for their baby would be similar to their previous child with CHD and so termination was not considered. The final difference between the two studies, again related to the anticipated outcome of the baby at birth, was the parents' response to the baby's condition at birth. In this study most parents were relieved when they saw their baby at birth. For the mothers in Matthews' (1990) study, the baby's birth reconfirmed the lethal nature of their baby's anomaly. Their experience was not relief, but rather "the revalidation, the living reality of the severe nature of the infant's abnormality and the eradication of the 'hoped for miracle' (p. 172). The outcome that they had been certain about was realized. Grief  The first two phases of the parents' experience was also characterized by grief responses. As there is no literature describing the parents' experience of finding out about their baby's heart problem or other congenital malformation antenatally, verification of this finding was sought in the literature pertaining to the experience of parents who find out that their newborn has a congenital anomaly. Many have conceptualized the parental responses to the birth of a child with a congenital anomaly in terms of loss and grief (Bristor,  101  1984; Goodman, 1964; Kennedy, 1970; Solnit and Stark, 1961). Fortier and Wanlass' (1984) five-stage model of a family crisis is a synthesis of much of this literature and provides a useful framework with which to compare the findings of this study. Despite the fact that the diagnosis of the problem occurred antenatally versus postnatally, many responses to the antenatal diagnosis mirror parent responses reported in the literature when the diagnosis was made after the baby was born. Parental responses during the suspicion to diagnosis phase of their experience, corresponded closely to Fortier and Wanlass' (1984) first stage of family crisis of "Impact". Although the words are slightly different, the "numbness, shock, anxiety and disorganization" that Fortier and Wanlass describe are corroborated by the this study's findings related to the parents' responses of shock, guilt, crying, anger, fear, confusion and wondering what it all meant. The second stage of family crisis, that of "Denial", was not congruent with what the parents experienced in this study, or more accurately perhaps, was not the way in which the experience was conceptualized by the investigator. Responses of "disbelief" and "not hearing" as described by Fortier and Wanlass (1984) were evident as the parents in this study described their experience. Such responses, however, were not presented as denial, but as the inevitable response to the devastating news of their baby's heart problem. The disbelief was more related to the shock that they described and the not hearing was related to "being fed so much information" at such a stressful time.  102  Fortier and Wanlass' "shopping for cures", "imaginary explanations", and "distorted expectation" were also not corroborated by the parents in this study. These terms seem to reflect the explanatory model of the professional. Parents hoped that by thinking positively, praying every night and believing in miracles they could make the heart defect would go away. Such responses have been interpreted as expressions of hope, not the "distorted expectations" Fortier and Wanlass write about. Mercer (1977) identified hope as one of the emotional responses of parents who had a baby born with a congenital anomaly. As well, the other emotional responses of shock, anger, fear, guilt and depression that she found were similar to the experiences of the parents in this study. In the third stage of Fortier and Wanlass' (1984) model, referred to as "Grief", ten responses are identified, and many are consistent with the responses of parents who knew of their baby's heart problem antenatally. Fortier and Wanlass' response of "sense of being different" was not a response found in this study except perhaps in the father of the baby who was diagnosed with Down's syndrome as well as CHD who expressed his fears regarding his child being treated differently in the future. One mother found that her friends did not know how to respond to she and her husband at first; "people got scared to talk to you, like one of F's cousins. She wanted to phone me so bad, but she was scared to." If in fact this reflects the "sense of being different" that Fortier and Wanlass describe, it did persist. This couple  103  talked openly about their baby's heart problem, and found their friends became more comfortable with them. It would seem therefore, that even though parents who found out about their baby's heart problem antenatally, had not yet seen their baby, their responses were similar to the grief responses of parents who find out about their baby's congenital anomaly after the baby is born. The major difference, however between the parents whose baby's congenital anomaly is diagnosed at birth and those whose baby's problem is diagnosed antenatally is the time period that must transpire before the implications of the baby's diagnosis can be known. Living through the rest of the pregnancy is a key aspect of the parents' experience. Maternal Tasks of Pregnancy Again, because parents' experience of antenatal diagnosis has not been described elsewhere, the author examined the findings in relation to the perinatal literature. The parents' efforts to imagine what their baby would be like at birth, their desire to know what the heart defect would mean for their anticipated baby and their worries and concerns related to the birthing of the baby will be discussed in relation to Rubin's maternal tasks of pregnancy (1984). Rubin's grounded theory is based on her study of pregnant women and so the responses of fathers who found out about their baby's CHD antenatally cannot be accounted for by her work.  104  Reva Rubin (1984) describes the "work" of pregnancy as four interdependent tasks: (1) seeking safe passage for herself and her child through pregnancy, (2) ensuring the acceptance of the child she bears by significant others, (3) binding in to her unknown child, and (4) learning to give of herself. Of note is that Rubin's theory was developed in the early 1960's when the high risk, high technology aspects of pregnancy and childbirth were not the reality they are today. Despite the advances in this area of health care, as exemplified by antenatal diagnosis of CHD, mothers' responses during the rest of their pregnancy verified that Rubin's maternal tasks still apply. Stainton, McNeil, and Harvey (1992), however, suggest that the tasks are altered in a high risk pregnancy or with a high risk newborn. The findings from their phenomenological study of women in high risk perinatal situations builds on Rubin's work. The resulting maternal tasks of uncertain motherhood are verified by the findings of this study. Seeking SAFE passage. Learning about the baby's heart problem,  sticking to the diabetic regimen if diabetic, resting lots, trying not to be stressed, working hard so that the baby's heart would work hard, and worrying about labour and birth were ways in which women sought safe passage for themselves and their babies with CHD. Stainton et al (1992) found that this first task of safe passage dominated the pregnancy. This finding is corroborated by women who knew about  105  their baby's heart defect antenatally in vivid their descriptions of their concerns regarding their baby and all they did to ensure his or her wellbeing. Two of the three women who were employed outside of the home at the time of the antenatal diagnosis, took time off work and eventually quit altogether so as to decrease their stress and focus on what was happening with regard to their baby. Seeking the services of an perinatologist and in two instances, a pediatrician, also showed concern for their baby's safety, as well as their own. The mothers' statements related to their thinking about how their baby would be during the labour and birth also reflected the all-consuming nature of this task during the rest of their pregnancy. Gaining acceptance by OTHERS. The second task, ensuring the acceptance of the baby by others, was evident in all women telling their friends and family about their baby's heart problem. One mother told "anyone who would listen." She wanted their opinions and any information that might help her make sense of what was happening to her. The husband's acceptance of the baby was important to the women and some described concerns about not being able to talk about the baby with their husbands, "it was too scary". One father tried to reassure his wife that it was not that he did not care about what was happening; he just did not know what to say or do, "But what can I do?" One mother's description of being "mad" at her husband because he would not feel their baby's movements is better understood in light of this task of seeking acceptance of the baby.  106  Stainton et al (1992) also found that the role of "others" in the high risk pregnancy was intensified, in that mothers were more dependent on those around them, and was extended, in that more professionals became involved. Many mothers recounted how they relied on their family and friends for support and all experienced increased involvement with health care professionals following the antenatal diagnosis of their baby's CHD. One woman's "information sheet" for presentation at her time of delivery in case "her" doctors were not available, exemplified the women's efforts to ensure acceptance of their baby. Binding-in to  the child. The task of binding-in to her unknown  child was well underway by the time parents in this study found out about their baby's heart problem. Mothers recalled their expectations regarding their baby before they found out about the heart problem. Their intense responses to the news of the baby's heart problem demonstrated the maternal child relationship present. Stainton et al's (1992) findings indicated that the binding-in task was challenged by the mother's self-protection efforts as the well-being of her baby was threatened. The women's struggle with preparing for the worst and hoping for the best reflected the challenging task of binding-in to the infant. Mothers focused on their baby's movements and could not help but believe that their baby would be fine and then "I was happy" said one mother. At the same time, in an effort to prepare for the  107  "what ifs", they tried to imagine what their baby would be like at birth considering the heart problem. Many mothers surmised what it would have been like if they would not have known about their baby's heart problem antenatally. "I wouldn't you know, wish that on my worst enemy" was one woman's conclusion. "It would have been horrible .... we would have been devastated." Mothers' knowing ahead gave them an opportunity to prepare for the birth and all that was in store for them related to the baby's heart problem. One mother stated, "we had enough to deal with, you know, with the surgery [that occurred right after the baby's birth]. I'm glad we knew ahead." The relationship between the imagined baby and the real baby at birth with regard to congenital anomalies is articulated clearly by Waechter (1977). The development of an image of the hoped-for child is an important process in the preparation for motherhood; in turn, the image allows for the beginning of the bonding process and provides the foundation for later secure attachment between partners. When the infant is born with a defect the discrepancy between the fantasy and the reality precipitates a tremendous sense of loss -- loss of a desired goal, of the visualized expected perfect child, of important elements of self-esteem, and of satisfaction in the birth process. An overwhelming sense of failure takes the place of the pride the parent expected to feel in a successful conclusion to month or years of hopes and plans. Profound grief is the normal response to such losses, characterized by preoccupation with each element of the loss and its particular meaning to the self (p. 300). GIVING of oneself. Giving of oneself, the fourth maternal task of  pregnancy, captures all that the women who knew about their baby's  108  heart problem antenatally, did to contribute to their baby's well being. Resting more, eating right, keeping their blood sugars regular, decreasing their stress, quitting work, attending all their appointments, picking strawberries, hoping, praying, and waiting were the many ways that the women fulfilled this task. At the same time, many felt like there was nothing they could do. There was a sense of helplessness as they waited for the baby's birth knowing that their willingness to give of themselves would not necessarily mean that their infant would be alright. Stainton et al (1992) found that during the high risk pregnancy, there was no guarantee of outcome related to the giving and mothers in this study were painfully aware of this as they anticipated the birth of their baby with CHD. The final giving of oneself occurs during the labour and birth. Women who knew about their baby's heart problem antenatally felt that this time did not come fast enough, despite their uncertainty about what their baby's condition, and their fears that the baby would die. Rubin (1984) found that as women approached their labour and delivery, despite their compounding fears about the labour itself and the outcome of the birth, they could not wait for delivery. They keenly anticipated their "wished-for child" and longed to be freed of the pregnancy. Several women were surprised that they did not think about their baby during the delivery considering their worries since the antenatal diagnosis of CHD. Rubin found that as the pain of labour increased, the considerations of the child receded. Fears related to the  109  child were replaced by the apprehension raised with each contraction. Despite the all-consuming thoughts of and worries for the anticipated baby during the pregnancy, the all-consuming nature of childbirth dominated the labouring mother. Once the baby was born, most mothers expressed relief that their baby was okay. This could be viewed as an unusual response, in that many babies were taken from the delivery room soon after birth for immediate medical attention. Rubin (1984) found that "once delivery occurs, whatever the outcome, fear disappears" (p. 132). Perhaps this response, coupled with the mothers' tendency to have prepared for the worst accounts for their positive appraisal of their baby's condition, despite the immediate medical intervention required. Women recalled what they noticed about the baby while in the delivery room. Many could not remember what they baby looked like, but recalled the baby's cry. Some recalled the baby's actions (e.g., "kicked" and "poohed"). Rubin (1984) found that there was an eagerness in the mothers to replace their fantasized picture of their baby with direct observations and that the first view of the child generally took in the baby's color or "generalized activity such as crying rather than the specific features of the baby" (p. 134). This observation, as well as the fact that most of the mothers had limited time with their baby in the delivery, helps to account for the descriptions the mothers provided about their newborn baby.  110  Some women expressed surprise that they did not think about their baby during labour. Colman and Colman (1991) view pregnancy as a psychological experience and describe the woman's feeling that childbirth creates an opposition between her needs and the baby's needs. She may fear that the people taking care of her would save the baby before they would save her. The fear is rooted in a deep internal struggle. A woman wants to love her baby and do what is best for it, but at the height of a difficult labor, the greater need may be for immediate relief. The baby does not exist for her at that moment (p. 110). This helps to explain why some mothers did not think about their babies despite their previous concern and worry about how the baby would tolerate labour and delivery. Colman and Colman (1991) also state that some women want to get through delivery because they are totally preoccupied with their baby. Several women remember wanting to get the baby "out" as quickly as possible because they were concerned about the baby's heart problem. Colman and Colman (1991) and Kitzinger (1979, 1989) both vividly describe the relentless power of labour especially for the first-time mother. This could account for the finding that the two primipara in the study both described a total lack of awareness of the baby during labour. Many women were afraid that their babies would not tolerate vaginal delivery, but all eight women had their babies vaginally. The onset of labour can be stopped by the woman's fears related to the  111  "threats and dangers" of the labour and the unfinished work of pregnancy (Rubin, 1984). The observation that five of the eight women in this study had their labours induced cannot be accounted for in the literature. As well, there is no literature that contributes to further understanding the role fathers played in the labour and delivery. The Overall Experience The experience of parents who knew about their baby's heart problem antenatally has been described in terms of three phases, 1) Suspicion to Diagnosis, 2) Diagnosis to Delivery and 3) Birth to Relief. Each phase was vividly described by parents and was characterized by particular responses. Pertinent concepts from the literature have been used in the discussion of these findings to enhance our understanding of parents' experience of antenatal diagnosis of CHD. As well, understanding of their experience is enhanced by noting parents' reflections on their overall experience. Parents were glad that they knew of their baby's heart problem antenatally. They were grateful for the preparation time, but at the same time found the experience difficult: F: ... I don't know. It's nice to know beforehand, but it just makes it hard the last four months when you know there's something wrong and you're sort of just counting everyday, one less, one less, one less you know bang, there is happens. (Em, em) But it does give you time to prepare for it though. (Em, em) Emotionally I think it's pretty tough.  112  M: It's hard, but you know like you're prepared. M: It's very painful, you know, the pain, but at least you're prepared you know. You know a little bit. As well as having the opportunity to prepare themselves and others close to them, parents were glad they "knew ahead" because "everybody just sort of knew what they could do and what was going to happen and you know we were informed .... It just made you feel a little more comfortable I think." "The doctors were more prepared" and "everybody was on alert....the heart team was on alert". Parents related the advantages of the antenatal diagnosis as well as the intensity of the experience; "it was too much. Things were pretty rough." Another mother remembered the emotion: M:^So I am crying for, well, from the start that we knew and from the night that I gave birth, you know, like every night, every night ... very well very tough .... It was really, I feel really bad because it is really positive that there's something wrong with the baby, now every night, I'm crying and crying. Another parent described the overall experience as "a roller coaster ride" and used anxiety, fear and terror to describe the experience: F: Well anxiety. (Anxiety) First words, yes (Okay) Nothing is closer. M: Yeah. F: Just anxious and then ultimately, it was like oh when you run out of fear you can always fall back on terror, you know, but it, it like that, (Yeah) it was a very tough and my, you know I, we couldn't stop our lives totally, like we could, I mean you can do it.  113  The duration of the experience was also described by many parents. One mother said, "It seemed like a very, very drawn out experience." Her husband added, "And it seems like I can remember each month I knew what was going on, but it just seemed like it dragged out." Another father talked about all the waiting: F: There's a lot of waiting involved .... Cause it starts right from like I was saying you start waiting, yes, okay. There's ultrasound, but until the baby is really out you don't know for sure. So we wait there. Then when the baby is out the next step is okay, now. Okay know what's going to happen? Now is he going to be stable or is he going to have to go in [to surgery] real quickly? Knowing, but not knowing characterized parents' overall experience of finding out about their baby's heart problem antenatally. They received a diagnosis at the time of the fetal echocardiogram, but the actual outcome could not really be known until the baby was born. M: Yeah because you didn't know what was, what was going to happen. There was just so many things that we were fed that could happen, this could happen. It like, okay, but what's going to happen [emphasis added] like you know and now, it's, you know, I don't really want to have any more kids. M: But of course at that time they weren't sure that she was going to come out, when she came out whether she was going to come out pink or blue, and explained what would happen if she came out blue.  114  Summary A description of the experience of parents who knew of their baby's heart problem before the baby was born has been presented in this chapter. The concepts of uncertainty, grief and maternal tasks of pregnancy were discussed in relation to the findings of this study and understanding of the findings was enhanced. Parents' reflections of their experience overall concluded the chapter and pointed to the two obvious, yet crucial aspects of the overall experience of the antenatal diagnoses of CHD: the diagnosis itself and the timing of the diagnosis, that is, during pregnancy. It is as if the diagnosis is received in principle only, because the baby to whom the diagnosis belongs is not received at the same time. The rest of the pregnancy must transpire before the reality of baby's heart defect will be known. The implications of this knowing, but not knowing are many and will be presented in the final chapter after a statement of study conclusions.  115  CHAPTER 5 Conclusions and Implications Introduction  This study was designed to discover and describe the experience of parents who knew about their baby's congenital heart defect antenatally. With advances in obstetrical ultrasound and fetal echocardiography , an increasing number of parents are learning of their baby's congenital anomaly before the baby is born. Little is known about the experience of such parents, particularly parents of babies with congenital heart defects. A detailed review of the literature and consideration of Kleinman's (1978) cultural system model revealed that the literature pertaining to antenatal diagnosis represents the perspectives of those in the professional sector. The "notions" or "informal descriptions" of what the antenatal diagnosis of CHD means for parents and families has not been studied. An explanatory model from the popular sector is necessary to plan and provide quality nursing care for this growing population. The qualitative method of phenomenology was employed to elicit the parents' explanatory model, to answer the question: What is the experience of parents of children with congenital heart defects who knew about their baby's congenital heart defect before the baby was born?  116  Data collection occurred through in-depth interviews with sixteen parents of eight babies whose CHD was diagnosed antenatally. Through a process of ongoing data collection and simultaneous data analysis the experience of twelve parents was described, and confirmed with them in subsequent interviews. The conceptualization of the experience was further validated and enhanced through interviews with two additional couples. As well, two nurses, one having experience with families of children with CHD and the other with families of children with spina bifida, confirmed the transferability of the findings. They recognized the described experience from their professional association with families of children with congenital anomalies. The parents' experience of knowing about their baby's heart defect antenatally occurred in three sequential phases. The first phase, Suspicion to Diagnosis, began when an obstetrical ultrasound raised suspicion regarding their baby's heart. The second phase, Diagnosis to Delivery, began when the suspected heart defect was confirmed through a fetal echocardiogram, and lasted until the onset of labour. The third phase, Birth to Relief, occurred at birth when the parents discovered what the heart defect meant for their child. As parents reflected on their experience of knowing about their baby's heart problem antenatally, they all stated that they valued the information they received antenatally; "We're glad we knew ahead of time." As well, all parents found the experience difficult. For both  117  mothers and the fathers, the first phase was characterized by grief and uncertainty. The second phase was also filled with uncertainty as parents awaited the birth of their baby, hoping for the best and yet feeling that they had to prepare for the worst. Again, both the mothers and the fathers were involved in this phase, trying to imagine what their baby with a heart problem would be like at birth. The third phase, the birth of the baby, was characterized by relief. For most parents, the baby's condition was better than what they had expected and prepared for. Several conclusions are drawn from these findings. From these conclusions, implications for nursing practice, education, and research are articulated.  Conclusions 1.  Three phases characterize parents' experience of knowing  about their baby's heart problem antenatally. Each phase is distinct in terms of what both the mothers and fathers experience and how they respond to their experience. 2.  The first phase, Suspicion to Diagnosis, is the most intense  phase as parents wait for confirmation of the suspected heart defect and then struggle to determine the meaning of the diagnosis for their anticipated baby. This phase is characterized by grief responses and uncertainty. Parents have difficulty processing information during this phase.  118  3.  The second phase, Diagnosis to Delivery, is characterized by  ongoing uncertainty and grief responses which occur in a roller coaster fashion. Both the fathers and the mothers try to imagine what their baby will be like, considering the heart problem, and prepare for the worst while at the same time hoping for the best. In preparing for the worst most parents prepare for the possibility that their baby may die. 4.  Most information that parents receive regarding their baby's  heart problem antenatally is medically focused. Because it comes from a variety of sources (i.e., the pediatric cardiologist, the perinatologist, and the family physician), parents sometimes receive misinformation (e.g., that their baby is likely to be stillborn). 5.  Parents have fears regarding labour and delivery, related to  their baby's heart problem. They are afraid that those attending to them during labour and delivery will not know about their baby's heart problem and that the baby may die during labour or at birth. 6.  During labour, some mothers are constantly aware of their  baby while others do not think about their baby. The ones who were not aware of their babies during labour are surprised by this when they think back on their labour and consider how much they worried since the antenatal diagnosis. During labour, the fathers keep a close watch on the baby's condition by observing the baby's heart rate monitor. 7. The third phase, Birth to Relief, when the baby is born, is characterized by the parents' relief that the baby's condition is better than what they had expected and prepared for. Relief occurs despite the  119  immediate medical intervention that many babies with CHD require after birth. 8.  Parents value the information they receive antenatally  regarding their baby's heart problem. Although this experience is difficult for them, they feel that the antenatal diagnosis affords them the opportunity to prepare themselves for their child's birth. 9.  Parents need support, consistent and accurate information, and  anticipatory guidance from the time that the antenatal diagnosis is made. 10. The experience of parents who have had a previous child with CHD is similar to those who have not, although perhaps less intense. These parents tend to anticipate a more positive outcome than do the parents who have not had a previous child with CHD. Implications The antenatal diagnosis of CHD is occurring with increasing frequency as the technology of perinatal ultrasonography and fetal echocardiography advances and becomes more available to women. The benefits of these advances from a medical perspective are being recognized as the births of babies with known CHD can be planned and carried out in facilities with tertiary pediatric intensive care required by many of these babies. Parents value this advantage for their baby, but at the same time express how difficult the experience of antenatal diagnosis is. The implications for nursing are many and present  120  exciting challenges for nurses in perinatal, pediatric cardiology, and community nursing. Practice Implications Parents who find out about their baby's heart problem antenatally face difficult challenges as they come to terms with the news of their baby's defect and must incorporate this devastating information into the image of their anticipated baby. They grieve the loss of their expected perfect baby and yet the reality of this loss is not fully known until the baby is born. Uncertainty characterizes their experience and the parents' anxiety increases as they anticipate labour and delivery. Until recently, nurses have had minimal involvement with these parents. There is, however, an important role for nurses to play during all phases of the parents' experience of knowing about their baby's heart defect antenatally. Nursing support must be available to the family from the time of raised suspicion regarding the baby's heart. Community health nurses or nurses involved with the family through childbirth education, or as nurse midwives, are in an ideal position to provide supportive care as the parents anxiously await investigation of the suspected heart defect. Anticipatory guidance regarding the intensity of the experience if the suspicion is confirmed could be provided, as well as encouragement that both parents be present at the fetal echocardiogram. Once the suspicion has been confirmed through the diagnosis of a congenital heart defect, a clinical nurse specialist (CNS) or advanced  121  practice nurse specializing in pediatric cardiology and family nursing must be available to provide support and anticipatory guidance as the parents grieve the loss of their perfect baby, experience uncertainty related to the diagnosis, and prepare for their baby's birth. Ongoing assessment of the parents' understanding of the heart defect and the implications of the condition, followed by appropriate and timely education, could play a vital role in decreasing parents' uncertainty and ensuring that parents are processing the information that they are receiving and that they are not receiving any misinformation (e.g., baby's with CHD being stillborn. There is no higher incidence of stillbirth among babies with CHD). The CNS can also ensure that parents know their resources for information and support in the tertiary perinatal and pediatric facilities, as well as in their own communities. Because some parents received misinformation, implications of this study relate to the provision of specialized information by both nurses and physicians. Ideally, information regarding the congenital heart defect should be provided to parents by the pediatric cardiologist and the cardiology CNS only. Likewise, information regarding the ongoing pregnancy and anticipated labour and delivery should come exclusively from the perinatologist and the CNS in perinatology. These specialists need to communicate with the family physicians and community health nurses closer to home so that the potential for misinformation at the community level can be minimized as well.  122  The prolonged time factor involved in most antenatal diagnoses provides many opportunities for misinformation to be conveyed as parents seek information and reassurances over time. This characteristic of antenatal diagnosis, however, also provides the opportunity for methodical and comprehensive communication between all members of the health care team regarding the needs of the family anticipating the birth of their baby with CHD as well as the care provided by each member of the team. As the birth of the baby approaches, expert nursing care is needed to help the parents prepare for labour, considering their added uncertainty related to their baby's heart problem. Misconceptions and fears related to the baby dying during birth, not being able to tolerate a vaginal delivery, and not crying at birth need to be addressed jointly by the cardiology and perinatal CNSs. Nurses caring for parents during the labour and delivery have an important role to play in supporting both the mother and the father. Reassurances are necessary regarding the baby's condition and acknowledging parents' added uncertainty . Parents need to be confident that those attending them during this crucial time have a full understanding of their baby's condition and will respond accordingly. Labour and delivery nurses should have complete information about the family's experience with the antenatal diagnosis, the baby's heart defect and the anticipated outcome. Advance care planning could be done by the perinatal CNS in  123  collaboration with the cardiology CNS and could be discussed with the parents to ensure that their concerns are addressed. Plans regarding the parents seeing the baby, holding the baby, and/or taking photographs of the baby before the baby is "scooped" must be discussed ahead of time with the perinatologist and incorporated into the overall care plan. Mercer (1977) emphasizes the shock that nurses in the delivery room experience at the birth of a child with congenital defects. It is a loss and shock for them, as well as for the parents. The antenatal diagnosis of congenital anomalies provides perinatal nurses with the opportunity to provide planned deliberative care for these parents, benefiting the family, as well contributing to nursing practice satisfaction. While the conclusions of this study are based on the experience of mothers and fathers who knew about their baby's congenital heart defect antenatally, the implications for nurses caring for parents whose babies have been diagnosed with congenital anomalies other than CHD may well apply. Education Implications Although antenatal diagnosis of CHD is relatively new, the implications for education are many. Health care providers involved with these mothers and fathers must be knowledgeable about the parents' experience. Providers must understand the concept of uncertainty so that care decreases parents' uncertainty. Theory related to grief responses must also be incorporated into the practice of all  124  those involved in the antenatal diagnosis of CHD, so that parents can be appropriately reassured and guided during their difficult experience. Ongoing education in the practice setting is essential to bring the current care providers up to date regarding the experience of the parents and their needs. Physicians, ultrasound technologists and nurses are the key groups that should be targeted for this education. CNSs in cardiology and perinatology are in the ideal positions to provide education for nurses providing care for parents during labour and delivery and following the birth of the baby, teaching about the needs of the parents and the implications of the known heart defect on the various aspects of the perinatal experience. One final implication for education is the need for educational materials for parents and professionals regarding the experience of antenatal diagnosis of CHD. These teaching materials, in the form of booklets, pamphlets, computer aided instruction, and/or audiovisual tools could be used with the parents to decrease their uncertainty related to their baby's heart defect, as well as with the health care professionals caring for parents and their babies before, during and after the birth. Education tools could be adapted for use by parents whose babies are diagnosed with other anomalies antenatally and by the professionals involved. Research Implications Research in the area of antenatal diagnosis of congenital anomalies is sparse and in the area of antenatal diagnosis of CHD,  125  nonexistent. The implications for nursing research therefore, are numerous. The method employed in this study was effective in eliciting the parents' explanatory model of their experience of the antenatal diagnosis of their baby's CHD. This study therefore, could be replicated with other parent populations and valuable information regarding the experience of parents who, for example find out about their baby's spina bifida antenatally, could be gained. Comparisons could be made among the various groups of parents. The relationship of uncertainty and the antenatal diagnosis experience requires further investigation. For example, what are the key factors that decrease or increase uncertainty for these parents? or what is the nurse's role in influencing parent uncertainty? The influence of the antenatal diagnosis on the maternal tasks of pregnancy requires further study, as does the role of the fathers that has been discovered in this study, but is not confirmed elsewhere in the literature. What are the paternal tasks of pregnancy and how are these affected by the antenatal diagnosis of CHD or other congenital anomalies? As nurses begin to provide care for parents who find out about their baby's heart problem antenatally, the influence of their care on parents' experience will need to be studied. The evaluation of education materials that are developed for use by parents and professionals will provide further opportunities for research. This study was limited to the parents whose babies with CHD were doing  126  well. The experience of parents whose baby's antenatal diagnosis of CHD results in the loss of their baby through termination of the pregnancy or death soon after birth warrants nursing investigation as well. Increasing numbers of parents experience the antenatal diagnosis of their baby's CHD; there are many parents however, whose baby's heart defect is not diagnosed until after birth. Comparative studies between these two groups of parents could provide valuable information regarding the specific needs of both groups. Two further questions for research arise from this study. First, what are the factors that influence the high incidence of labour induction in this group and what are the implications of this for the parents and baby? Second, how much time is allowed for the baby and parents to be together following the birth of the baby and what influences the decision to remove the baby from the delivery room? Are any of the babies unnecessarily separated from the parents immediately after birth, that is, when still asymptomatic, because a heart defect has been diagnosed antenatally? The advantages of technology are valuable, but the influences of technology on the experience of those that are at the receiving end must be examined. Summary The purpose of this study was to discover and describe the experience of parents who knew about their baby's congenital heart  127  defect antenatally. In Chapter One, the problem was presented as well as an overview of how the study would be carried out. In Chapter Two, a review of selected literature revealed the lack of knowledge pertaining to the parents' experience of antenatal diagnosis of CHD and Chapter Three presented the method employed to address the research question. In Chapter Four, study findings were presented and discussed in terms of related literature. Overall, parents who knew about their baby's heart problem before their baby was born valued the information that they received antenatally. They were "glad" that they knew about their baby's heart problem "ahead of time", but the not knowing inherent in the timing of the diagnosis, during the pregnancy, contributed to the experience being difficult for them. Nursing has a role to play with parents who find out about their baby's heart defect antenatally, as the implications articulated in this last chapter indicate.  128  References Allen, R. E. (Ed.). (1990). The concise Oxford dictionary. New York: Oxford University Press. Anderson, J. (1992). Process of data analysis. Unpublished paper presented in Nursing 522, University of British Columbia. Benkendorf, J. L. (1987). Grievings and believings: Helping parents through imperfect beginnings. Birth Defects: Original Article Series, 23(6), 25-36. Bristor, M. W. (1984). The birth of a handicapped child: A wholistic model for grieving. Family Relations. 33(1), 25-32. Carlson, D. E (1991). Prenatal Diagnosis: Ultrasound advances. Obstetrics and Gynecology Clinics of North America. 18(4), 797803. Clark, S. L., & DeVore, G. R. (1989). Prenatal diagnosis for couples who would not consider abortion. Obstetrics and Gynecology, 73(6), 1035-1037. Colman, L. & Colman, A. D. (1991). Pregnancy: The psychological experience. New York: The Noonday Press. Costello, A. (1987). Psychosocial management of patients in a fetal medicine and surgery program. Birth Defects: Original Article Series, 23(6), 62-74. Crawford, D., Chita, S., & Allan, L. (1988). Prenatal detection of congenital heart disease. 159(2), 352-356. D'Arcy, E. (1968). Congenital defects: Mothers' reactions to first information. British Medical Journal, 3 796-798. Drotar, D., Baskiewicz, B. A., Irvin, N., Kennel, J., & Klaus, M. (1975). The adaptation of parents to the birth of an infant with a congenital malformation: A hypothetical model. Pediatrics, 56(5), 710-717.  129  Fortier, L. M. & Wanlass, R. L. (1984). Family crisis following the diagnosis of a handicapped child. Family Relations. 33(1), 1324. Carson, A., Benson, R. S., Tyler, L. & Patton, C. (1978). Parental reactions to children with congenital heart disease. Child Psychiatry and Human Development, 9(2), 86-94. Carson, A., Bricker, J. T., & McNamara, D. G. (1990). The science and practice of pediatric cardiology. Philadelphia: Lea and Febiger. Glaser, H. H., Harrison, G. S., & Lynn, D. B. (1964). Emotional implications of congenital heart disease in children. Pediatrics, 33(4), 367-379. Goodman, L. (1967). Continuing treatment of parents with congenitally defective infants. Social Work. 9 92-97. Green, D. (1988). Prenatal diagnosis: When reality shatters parents' dreams. Nursing 88, 18(2), 61-64. Griffiths, D. M., & Gough, M. H. (1985). Dilemmas after ultrasonic diagnosis of fetal abnormality. The Lancet, 1(8429), 623-624. Hall Johnson, S. (1986). Nursing assessment and strategies for the high risk family: High risk parenting. Philadelphia: J. B. Lippincott Company. Hutson, J. M, MacKenzie, J. R., Young, D. G., McNay, M. B., Whittle, M. J., & Raine, P. A. (1985). Antenatal diagnosis of surgical disorders by ultrasonography. The Lancet, 1(8429), 621623. Jackson, P. L. (1974). Chronic grief. American Journal of Nursing, 74(July), 1288-1291. Jackson, P. L. (1985). When the baby isn't perfect. American Journal of Nursing, 85(April), 395-399.  130  Kennedy, J. F. (1979). Maternal reactions to the birth of a defective baby. Social Casework, 51(July), 410-416. Kitzinger, S. (1979). Education and counseling for childbirth. New York: Schocken Books. Kitzinger, S. (1989). Giving birth: How it really feels. New York: The Noonday Press. Kleinman, A. (1978). Concepts and a model for the comparison of medical systems as cultural systems. Social Science and Medicine. 12 85-93. Kleinman, A. (1988). The illness narratives: Suffering, healing, and the human condition. New York: Basic Book Inc. Publishers. Knaack, P. (1984). Phenomenological research. Western journal of Nursing Research, 6(1), 107-114. Kupst, M., Blatterbauer, S., Westman, M. A., Schulman, J. L. & Paul, M .H. (1977). Helping parents cope with a diagnosis of congenital heart defect: An experimental study. Pediatrics, 59(2), 266-272. Lincoln, Y. S., & Guba, E. G. (1985). Naturalistic inquiry. California: Sage Publishers. Linde, L. M., Rasof, B., Dunn, 0. & Rabb, E. (1966). Attitudinal factors in congenital heart disease. Pediatrics, 38(1), 92-101. Lorenz, R. P., & Kuhn, M .H. (1989). Multidisciplinary team counseling for fetal anomalies. American Journal of Obstetrics and Gynecology. 161(2), 263-266. Lynch, M. E. (1989). Congenital defects: Parental issues and nursing supports. Journal of Perinatal and Neonatal Nursing. 2(4), 53-59.  131  Matthews, A. L. (1990). Known fetal malformations during pregnancy: A human experience of loss. Birth Defects: Original Article Series, 26(3), 168-175 Mercer, R. T. (1974). Mothers' responses to their infants with defects. Nursing Research. 23(2), 133-137. Mercer, R. T. (1977). Nursing care for parents at risk. New Jersey: Charles B. Slack, Inc. Mishel, M. H. (1988). Uncertainty in illness. Image: Journal of Nursing Scholarship. 20(4), 225-232. Miller, B. F., & Keane, C. B. (1983). Encyclopedia dictionary of medicine, nursing, and allied health. (3rd ed.). Philadelphia: W. B. Saunders Co. Morse, J. (1986). Quantitative and qualitative research: Issues in sampling. In P. L. Chinn (Ed.), Nursing Research Methodology: Issues and Implementation (pp. 181-193). Maryland: Aspen Publishers. Oberhaensli, P., Extermann, P., Friedli, B., & Beguin, F. (1989). Ultrasound screening for congenital cardiac malformations in the fetus: Its importance for peri- and postnatal care. Pediatric Radiology. 9 94-99. Ornery, A. (1983). Phenomenology: A method for nursing research. Advances in Nursing Science, 5(2), 49-63. Pallikkathayil, L., & Morgan, S. A. (1991). Phenomenology as a method for conducting clinical research. Applied Nursing Research, 4(4), 195-200. Rubin, R. (1984). Maternal identity and the maternal experience. New York: Springer Publishing Company. Sandelowski, M. (1986). The problem of rigor in qualitative research. Advanced Nursing Science, 8(3), 27-37.  132  Sandelowski, M, Davis, D. H., & Harris, B. G. (1989). Artful design: Writing the proposal for research in the naturalist paradigm. Research in Nursing and Health, 12 77-84. Sandor, G. (1992, February). Fetal echo diagnosis and treatment. In G. S. Sandor (Chair), Congenital Heart Disease. Symposium conducted at Child Health 2000, Vancouver, B.C. Solnit, A. J., & Stark, M. H. (1961). Mourning and the birth of a defective child. Psychoanalytic Study of the Child, 1, 523-537. Stainton, M. C., McNeil, D., & Harvey, S. (1992) Maternal tasks of uncertain motherhood. Maternal-Child Nursing Journal, 20(3), 113-123. Waechter, E. H. (1977). Bonding problems of infants with congenital anomalies. Nursing Forum, 16(3,4), 298-318.  133  APPENDIX A Permission for Initial Contact  THE UNIVERSITY OF BRITISH COLUMBIA 134  School of Nursing T. 206-2211 Wesbrook Mall Vancouver, B.C. Canada V6T 2B5 Fax:(604) 822-7466  Permission for Initial Contact THE EXPERIENCE OF PARENTS WHO LEARN OF THEIR BABY'S HEART DEFECT BEFORE THE BABY IS BORN With recent advances in pediatric cardiology more and more parents are finding out about their baby's heart problem before the baby is born. It is clear that very little is known about what this experience is like for parents. It is important for health care providers to understand this experience from the parents' perspective so that we can better provide the nursing care needed by these families. I am conducting a study in which I hope to discover and describe the experience of parents of children with congenital heart defects who knew about their baby's defect before the baby was born. The study will involve interviewing parents about this experience. If you are interested in hearing more about the study please return this form signed to the Cardiology Clinic at B. C. Children's Hospital or call the clinic nurse at 875-2345 Local 7111. The faculty advisor for this study is Judy Lynam and you can contact her at 822-7476. Thank you. Gwen Rempel R. N., B. S. N. Masters in Nursing Student I give permission for Gwen Rempel to contact me. Name / Signature: ^ Date: ^ Telephone number: ^  135  APPENDIX B Participant Consent Letter  THE UNIVERSITY OF BRITISH COLUMBIA  School of Nursing T. 206-2211 Wesbrook Mall Vancouver, B.C. Canada V6T 2B5 Fax:(604) 822-7466  Participant Consent Letter Title of the Study: A PHENOMENOLOGICAL STUDY OF THE EXPERIENCE OF PARENTS OF CHILDREN WITH CHD WHO KNEW OF THEIR BABY'S CONGENITAL HEART DEFECT ANTENATALLY Investigator:  ^  GWEN REMPEL R. N., B. S. N. 879-0250 Masters in Nursing Student University of British Columbia  The purpose of this study is to discover and describe the experience of parents of children with congenital heart defects who knew about their baby's heart defect before the baby was born. The study will involve interviewing parents about this experience. I understand that: -participation in this study is entirely voluntary and refusal to participate will in no way affect the present or future medical or nursing care that my child receives. -I can withdraw from the study at any time or refuse to answer any questions or discuss any topic, with no effect on my child's present or future medical or nursing care. -there will be a maximum of three interviews of approximately one hour each. These will take place in my home or at another location selected by me.  .../2  136  137  -2-the interviews will be tape recorded and I can request erasure of any tape or portion of tape at any time during the study. -the tapes will be transcribed (typed) and any information identifying me personally as a participant will be removed from the transcription. -the tapes will be destroyed at the end of the study. -there are no known personal risks or discomforts for me or other family members except that of the disclosure of my experience. -I will have access to the findings upon completion of the study. -if I have any questions at any time during the study, I may contact Gwen Rempel The faculty advisor for this research project is Judith Lynam and I can contact her at 822-7476 with any further questions or concerns. I acknowledge receipt of a copy of the participant consent form. I consent / I do not consent to participate in the study. Signature:  ^Date: ^  138  APPENDIX C Trigger Questions  139  Trigger questions 1. Can you think back to when you first heard about the possibility of your baby having a heart problem? Tell about that experience. or What were feeling at that time? 2. As you think about the time from when you first found out to when your baby was born. What was that time like for? Are there things that particularly stand out in your mind? 3. Can you tell me about when your baby was born. 4. What kind of things happened with regard to your baby and the problem that had been suspected? 5. What stands out in your mind when you think about your baby being born? 6. What about knowing about your baby's problem if anything influenced your experience around the time your baby was born? 7. Is there anything else that you would like to tell that is related to your experience of knowing about your baby's heart problem before he or she was born?  140  APPENDIX D Demographic Data  141  DEMOGRAPHIC DATA Information About Child  Age of child:^  Sex of child: Female^Male  Diagnosis: ^ How many weeks gestation was the baby when you found out about the heart problem: ^ Hospital of birth: ^ Length of time in hospital following birth: ^ Medical or surgical treatment received:  Information About Other Family Members:  SIBLINGS Age:  Sex:  Female^Male Female^Male  ./2  142  -2PARENTS Age of mother:  ^Cultural background ^  Age of father:  ^Cultural background ^  How many years together: ^  Educational Level: Mother^Father University or college graduate Some university or college High school graduate Some high school education ^ Less than high school education Yearly Annual Family Income Less than $25, 000 $26,000 to 35,000 $36,000 to 45,000 $46,000 to 55,000 Greater than 55,000  143  APPENDIX E Ethics Approval  144  The University of British Columbia^B92-214 Office of Research Services  BEHAVIOURAL SCIENCES SCREENING COMMITTEE FOR RESEARCH AND OTHER STUDIES INVOLVING HUMAN SUBJECTS CERTIFICATE^of  APPROVAL  INVESTIGATOR: Lynam, M.J. UBC DEPT:^Nursing INSTITUTION: Childrens TITLE:^A phenomenological study of the experience of parents of children with congenital heart disease who knew of their baby's heart defect antenatally NUMBER:^B92-214 CO-INVEST:^Rempel, G.R. APPROVED:^  S EP 1 5 1992  The protocol describing the above-named project has been reviewed by the Committee and the experimental procedures were found to be acceptable on ethical grounds for research involving human subjects.  4  4L Dr. R.D. pratley Directo , Research Services and Acting Chairman  THIS CERTIFICATE OF APPROVAL IS VALID FOR THREE YEARS FROM THE ABOVE APPROVAL DATE PROVIDED THERE IS NO CHANGE IN THE EXPERIMENTAL PROCEDURES  145  %%Ale British Columbia's^,s•  Children's Hospital September 9, 1992  Gwen Rempel Cardiology Nursing Room 3G42 B.C. Children's Hospital Dear Ms. Rempel: RE: APPLICATION TO THE IN-HOSPITAL RESEARCH REVIEW COMMITTEE The In-Hospital Research Review Committee of Children's Hospital has approved your proposed research project entitled "A Phenomenological Study of the Experience of Parents of Children with CHD who knew of their Baby's Congenital Heart Defect Antenatally. Please note that while we have tried to ensure that your research application form had appropriate signatures to persons responsible for areas of the Hospital likely to be affected by your research, it is still your responsibility to lay out adequate lines of communication to everyone in the Hospital who is likely to be affected by your project. Sincerely,  Ross Petty, M.D., F.R.C.P.C. Chairman In-Hospital Research Review Committee :voa  4480 Oak Street, Vancouver, B.C. V6H 3V4 Phone: (604) 875 2345 -  146  APPENDIX F The Experience  KNOWING BUT NOT KNOWING: THE EXPERIENCE OF PARENTS WHO KNEW ABOUT THEIR BABY'S HEART PROBLEM ANTENATALLY ANTENATAL DIAGNOSIS OF CHD Waiting for the "brick wall" SUSPICION TO DIAGNOSIS  REST OF THE PREGNANCY  REALITY /CONFIRMATION OF CHD --->^"Picking up the pieces"^---> "He cried" BIRTH TO RELIEF DIAGNOSIS TO DELIVERY  The Parents' Experience  The Parents' Experience  The Labour  *Suspicion raised * W aiting *The fetal echocardiogram *Suspicion confirmed  *"It was an eternity"  *"So I did all I can" *1 didn't think about the baby once"  Parental Responses *"I was shocked" *"Maybe it was my fault" *"I couldn't stop crying" *"I was so mad" *"We might lose him" *Upside down world *"You don't know what it all means"  Parental Responses *"I was hoping... that it would be perfect" *"But what's going to happen?" *"Kick, kick, kick" *"Scared to grow too attached" *"We prepared ourselves for the worst" *"We might lose him" *"Think positive *"Praying that he'll be okay" *"Asking a million, zillion questions" *"We broke it to everybody" *Putting things in perspective  The Birth *"He cried" 'Scoop and run" *"He's going to be okay"  


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