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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 THEIRBABY'S HEART DEFECT BEFORE THEIR BABY WAS BORNbyGWENDOLYN RUTH REMPELB.Sc.N., University of British Columbia, 1983A THESIS SUBMITTED IN PARTIAL FULFILLMENT OFTHE REQUIREMENTS FOR THE DEGREE OFMASTER OF SCIENCE IN NURSINGinTHE FACULTY OF GRADUATE STUDIESThe School of NursingWe accept this thesis as conformingto the required standardTHE UNIVERSITY OF BRITISH COLUMBIAApril 1993© Gwendolyn Ruth Rempel, 1993In presenting this thesis in partial fulfilment of the requirements for an advanceddegree at the University of British Columbia, I agree that the Library shall make itfreely available for reference and study. I further agree that permission for extensivecopying of this thesis for scholarly purposes may be granted by the head of mydepartment or by his or her representatives. It is understood that copying orpublication of this thesis for financial gain shall not be allowed without my writtenpermission.(Signature) Department of School of NursingThe University of British ColumbiaVancouver, CanadaDate April 23, 1993DE-6 (2/88)iiAbstractThis study was designed to discover and describe the experience ofparents who knew about their baby's congenital heart defect (CHD)antenatally. With advances in obstetrical ultrasound and fetalechocardiography, more parents are learning of their baby's congenitalanomaly before their baby is born. Little is known, however, about theexperience of the parents who receive information about their baby'sCHD antenatally.Review of the literature and consideration of Kleinman's (1978)cultural system model revealed that the literature pertaining toantenatal diagnosis represents the perspectives of those in theprofessional sector. The experience of antenatal diagnosis of CHD fromthe parents' perspective has not been studied. Their explanatorymodels are essential if we are to plan and provide nursing care for thisgrowing population.The qualitative method of phenomenology was employed to elicitthe parents' explanatory model - to answer the question, What is theexperience of parents of children with congenital heart defects whoknew about their baby's congenital heart defect antenatally? Datacollection occurred through in-depth interviews with 16 mothers andfathers of eight children whose CHD was diagnosed antenatally.Through a process of ongoing data collection and simultaneous dataanalysis the experience of these parents was constructed. Subsequentinterviews were used to validate emergent themes.111The parents' experience of knowing about their baby's heart defectantenatally seemed to best be understood and explained through thedescription of three phases. The first phase, Suspicion to Diagnosis,began when suspicion was raised regarding their baby's heart throughan obstetrical ultrasound. The second phase, Diagnosis to Delivery,began when the presence of the suspected heart defect was confirmedby a fetal echocardiogram. The third phase, Birth to Relief, was whenthe baby was born and parents discovered what the heart defect meantfor their child. Concepts central to understanding the experience areuncertainty, grieving and maternal tasks of pregnancy. The meaningof these concepts to parents' experience of antenatal diagnosis isexamined.The implications for nursing are many. The study findings clearlyemphasize nursing has an important role in providing support,education, and anticipatory guidance for parents as they face theuncertainties of their pregnancy and their baby's birth knowing, but notknowing about their baby's congenital heart defect.ivTable of ContentsAbstract ^ iiTable of Contents ^ ivList of Figures viiAcknowledgements ^ viiiCHAPTER 1: INTRODUCTIONBackground and Conceptualization of the Problem^1Problem Statement  ^5Purpose of the Study  ^6Research Question  ^7Definition of Terms  ^7Introduction to the Method  ^7Significance of the Study  ^8Assumptions  ^9Limitations of the Study  ^9Summary  ^10CHAPTER 2: REVIEW OF SELECTED LITERATUREIntroduction  ^12The Birth of a Baby with a Congenital Anomaly  ^12Antenatal Detection of Congenital Anomalies  ^18Antenatal Detection of Congenital Heart Defects . . .  ^ 22Synthesis of Current Knowledge  ^23CHAPTER 3: METHODSIntroduction  ^24Sample Selection and Selection Criteria  ^24Participant Recruitment  ^22VDescription of the Participants  ^25Data Collection Procedures  ^27Data Analysis  ^30Trustworthiness Criteria  ^31Procedures for Protection of Human Rights  ^36Summary ^  37CHAPTER 4: PRESENTATION AND DISCUSSION OF FINDINGSIntroduction  ^39Phase One Waiting for the "Brick Wall": Suspicion to DiagnosisSuspicion Raised  ^41Waiting  ^44The Fetal Echocardiogram  ^47Suspicion Confirmed  ^50The Parents' Responses  ^52"I was shocked"  ^52"Maybe it was my fault"  ^53"I couldn't stop crying"  ^55"I was so mad"  ^57"We might lose him"  ^59Upside down world  ^60"You don't know what it all means"^61Phase Two "Picking up the Pieces": Diagnosis to DeliveryThe 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"Praying that he'll be okay"  ^76"Asking a million, zillion questions" . . .^76"We broke it to everybody" ^ 77Putting things into perspective ^ 79viPhase Three "He Cried": Birth to ReliefThe Labour  ^80"I thought about the baby"  ^80"I didn't think about the baby once"  ^84The Birth  ^85"He cried"  ^86"He's going to be okay"  ^88"Scoop and run"  ^90Analysis of Central ConceptsUncertainty  ^91Appraisal of Uncertainty  ^95Grief  ^100Maternal Tasks of Pregnancy ^103The Overall Experience  ^111Summary ^  114CHAPTER 5: CONCLUSIONS AND IMPLICATIONSIntroduction  ^115Conclusions  ^117Implications  ^119Practice Implication  ^120Education Implications  ^123Research Implications  ^124Summary ^  126References  ^128AppendicesAppendix A - Permission for Initial Contact  ^133Appendix B - Participant Consent Letter  ^135Appendix C - Trigger Questions  ^138Appendix D - Demographics  ^140Appendix E - Ethical Approval  ^143Appendix F - The Experience  ^146List of FiguresviiFigure 1:^Health care system: internal structure  ^4viiiAcknowledgementsI would like to thank the parents who so vividly shared with metheir experience of knowing about their baby's heart problem beforetheir baby was born. Your babies' hearts received much attention fromearly on and I will always remember how you as parents prepared forthe worst and yet deep down hoped for the best, and got your beautifulcrying "prizes" in the end.I wish to thank Dr. George Sandor for welcoming me into theworld of antenatal diagnosis. It is an ongoing privilege to work withyou.Thank you as well to my thesis committee members, Judy Lynam(Chairperson), Elaine Carty and Betty Davies for your invaluablefeedback, guidance and care. You have challenged me and inspired me.I am grateful for the grant I received from the Sheena DavidsonNursing Research Fund. Thanks to Milda Kazlauskas of the ResearchUnit for taking care of the money and to Sue Humphries for typing.Finally, I would like to express appreciation to my family, friendsand colleagues. Your encouragement, optimism and understandingenabled me to endure the tough moments and enjoy the manysatisfying moments of the thesis process.CHAPTER 1IntroductionBackground and Conceptualization of the ProblemThe birth of a baby represents in many instances a joyous and longanticipated event. Parents have fantasized about their child and havedreamed and hoped about their future with their new baby. When ababy is born with a congenital anomaly parents experience a significantloss. Solnit and Stark (1961) in their seminal work, described thisexperience as the "sudden loss of the baby that was expected; and thesudden birth of a feared, threatening, and anger-evoking child" (p. 525).They found that mothers' mourning reactions were similar to whatwas observed in those who had experienced the death of a child. Themain difference between the two experiences was "the persistent effecton the mother of the living defective child who realistically requirescare and attention" (p. 533).Parents whose baby is born with a congenital anomaly must grievethe loss of their hoped for child while at the same time becomeinvolved with their received child. Parents often lack the time andenergy to work through their grief as they are caught up in the whirl ofmedical activities surrounding their baby. They are immediately facedwith investigations and history gathering, the confirmed diagnosis,and then the barrage of information regarding the diagnosis, treatmentplans and options, and anticipated outcomes. Although assimilating1this information is difficult (Fost, 1981, p. 321), parents are expected tomake decisions on behalf of their baby regarding treatment, as well aslearning how to care for their child with his or her special needs.Congenital heart defects (CHD) account for the largest number ofmajor congenital anomalies (Carlson, 1991). The incidence of CHD iseight per 1000 (Carson, Bricker, & McNamara, 1990) and many of thesedefects are detected within the first days of the baby's life. Suddenly,parents are faced with the devastating news that their perfect lookingnewborn has a life threatening anomaly. The baby often requiresimmediate specialized assessment and intervention and is transferredto the nearest tertiary hospital. Despite physical and emotionalexhaustion related to the labor and delivery, most parents accompanyor follow their baby to the pediatric center and the reality of thisunexpected event unfolds before them.With advances in obstetrical ultrasonography and fetalechocardiography many complex heart defects are being detectedantenatally (Crawford, Chita, & Allan, 1988). In British Columbia, fetalechocardiography has been available since 1979, with over 1500 scanshaving been performed. In 1990 and 1991, approximately 300 scanswere done each year with cardiac malformations being detected in 40-50fetuses per year (Sandor, 1992). An increasing number of parents arelearning of their baby's CHD during pregnancy. What is the experienceof these parents who receive news of their baby's heart defectantenatally?2One report of a fetal echocardiography program indicates that aswell as evaluating the risk factors for delivery and making thenecessary arrangements ahead of time, they "also carefully prepared thefuture parents in providing them with detailed information"(Oberhaensli, Extermann, Friedli, & Beguin, 1989, p. 98). They concludethat fetal echocardiography is beneficial for the planning, timing andlocation of the delivery, and that the antenatal diagnosis "allows inaddition the psychological preparation of the future parents" (p. 99).Aspects of this "psychological preparation" are discussed inliterature regarding antenatal detection of congenital anomalies. Clarkand DeVore (1989) state that it is easier from "a psychologicalstandpoint for parents to receive the news of an anomalous fetus in thecalm, supportive atmosphere of a doctor's office than to be suddenlyconfronted with an abnormal child after months of waiting and manyhours of painful labor" (p. 1036). They also claim that the antenataldiagnosis allows parents time to prepare themselves emotionally,physically, and financially for the birth of their baby with a congenitalanomaly, as well time to "attempt to answer, according to their ownparticular social or religious framework and with appropriatecounselors, all the questions of why" (p. 1036).Lorenz and Kuhn (1989) state that "when a fetal diagnosis isestablished remote from delivery, the additional burden of prolongedanticipation and uncertainty combined with the lack of opportunity todirectly bond with a visible child requires the full support of the3Professional sectorPoints of interaction,entrance and exitBeliefsChoices and decisionsRolesRelationshipsInteraction settingsInstitutionsBoundary linesFolk sectorPoints ofinteraction,entranceand exitmedical team and the extended family" (p. 263). They recommend amultidisciplinary team counseling approach.These observations reflect efforts to effectively provide care forparents who know about their baby's congenital anomaly antenatally,but they are based on the experiences and perceptions of health careprofessionals. There is no literature regarding the parents' perceptionsor interpretations of the experience of knowing about their baby'scongenital anomaly or, more specifically, their baby's heart defectantenatally.According to Kleinman (1978), the parents' perspective must beelicited and understood in order for health care providers to beeffective in caring for them. Kleinman's cultural system modeldescribes health care systems in terms of three social arenas withinPopular sector:(a) Individual - based(b) Family - based(c) Social nexus - based(d) Community - based Health Care SystemFigure 1. Health care system: internal structureAdapted from "Concepts and a Model for the Comparison of Medical Systems asCultural Systems", by A. Kleinman, 1978, Social Science and Medicine, R, p. 86.4which sickness is experienced and reacted to: (1) the popular sectorwhich "comprises principally the family context of sickness and care,but also includes social network and community activities, (2) theprofessional sector, and (3) the folk sector, which includesnonprofessional healing specialists" (p. 86). Within each sector is thecontext in which the individual understands and experiences specificillness episodes. Kleinman refers to the "notions" or "informaldescriptions of what an illness is about" as explanatory models(Kleinman, 1988, p. 120). Health care relationships are conceptualizedas transactions between different explanatory models. "Notinfrequently, explanatory models conflict. When they do ... theseconflicts impede health care" (Kleinman, 1978, p. 88). Communicationregarding explanatory models between those in the popular sector andthose in the professional sector is essential. The explanatory model ofparents who know about their baby's heart defect antenatally has notbeen elicited.Problem StatementThe birth of a baby with a congenital anomaly is a devastatingexperience for parents. The unexpected news of their baby's conditionis experienced as a loss, but the opportunity to grieve the loss of thehoped for baby is often overshadowed by the immediate demands ofthe baby, the barrage of information to absorb and the decisions to bemade.5Increasingly, congenital anomalies are being diagnosedantenatally, including congenital heart defects, which account for thelargest number of major congenital malformations. Little is knownabout the parents' experience of knowing about their baby's heart defectantenatally. Health care professionals note that antenatal diagnosisallows the baby to be born near a tertiary center and comment both onthe long anxious wait that the parents experience as well as on the"psychological" issues that can be addressed by the parents during thistime. There is no literature, theoretical or empirical, however, thataddresses the perspective of these parents. With further advances infetal echocardiography and antenatal screening, the implications of thispaucity will become more evident as health care professionals,including nurses, will be faced with growing numbers of these parentsneeding care.Purpose of the StudyThe purpose of this study is to discover and describe theexperience of parents of children with CHD who knew of their baby'sheart defect antenatally, so that health care professionals, includingnurses, will be better able to plan and provide care for these parentsfrom the time of the diagnosis until the birth of the baby, as well asduring the time that follows the baby's birth.6Research QuestionThe question directing this study is: What is the experience ofparents of children with congenital heart defects who knew about theirbaby's congenital heart defect antenatally?Definition of TermsExperience. "An event regarded as affecting one" (Allen, 1990, p.411).Parents. The biological mother of the baby whose heart defect isdetected antenatally, and her partner.Congenital heart defect. "A structural defect of the heart or greatvessels or both, present at birth. Any number of defects may occursingly or in combination. They result from improper development ofthe heart and blood vessels during the prenatal period" (Miller &Keane, 1983, p. 260).Antenatal diagnosis. Diagnosis is made before the birth of thebaby using ultrasound technology.Introduction to the MethodThe conceptualization of the problem in terms of the need to elicitthe explanatory model of parents who have experienced the antenataldiagnosis of CHD, and the resulting research question directs theresearcher to the naturalistic design of phenomenology."Phenomenology is the study of human experience from the actors'7particular perspective" (Knaack, 1984, p. 107). The goal of thisqualitative research method is to discover and understand the livedexperience of the individual from his or her vantage point.Phenomenology therefore will be used to discover and describe thelived experience of the parents who knew about their baby's heartproblem antenatally.Significance of the StudyScientific significanceThis study is significant in that there is minimal research relatedto the parents' experience of knowing of their baby's congenital heartdefect before the baby is born. Neither is there research related to theexperience of parents who know antenatally about other congenitalanomalies. This study is necessary to begin to fill this gap and has thepotential of drawing attention to the need to discover the experience ofparent populations who know about their children's congenitalanomaly antenatally.Practical significance Only with the parents' perspectives on their experience ofknowing about their baby's congenital heart defect antenatally willnurses be able to plan and provide appropriate care. This knowledgewill also be useful in educating nurses about caring for these parents, aswell as providing useful information for the other health careprofessionals that are involved with these parents.8Assumptions This study is based on the assumption that the parents' experienceof finding out about their baby's heart problem before the baby is bornis a meaningful experience for them and that they can communicatethis meaning. This is based on the "assumption of thephenomenologist ... that people do act as self-observers and do payattention to themselves in terms of their activities and experience"(Knaack, 1984, p. 111).Limitations of the StudyFinancial and time constraints potentially prevented theresearcher from eliciting the participation in the study of parents wholived outside a four hour commuting range. One such family was ableto participate in the study because their baby remained in hospital foran extended period of time and so the first interview was done duringthis time. A second interview was also possible, despite theirgeographical location, as they were willing to participate in aninterview when they returned for a follow-up appointment with theircardiologist several weeks after their baby was discharged from thehospital. Through acquired grant money two four hour trips werepossible.As this was a graduate level thesis, the sample size at the outset ofthe study was restricted to six to eight participants (i.e., the parents ofsix to eight children), therefore limiting the possibility that a point of9data "saturation" would be reached. In fact, as will be described inChapter Three, many aspects of the parents' experience were brought toa point of data saturation in the interviews with the first six couplesand then were further validated in interview with the seventh andeighth couple. It would seem that a sample size of eight couplesallowed for data saturation.Summary The diagnosis of congenital heart defects antenatally is becomingmore common as obstetrical ultrasound and fetal echocardiographytechnology advances. As this new population of parents who knowabout their baby's heart problem during the pregnancy is emerging it isevident that their needs for care must be addressed. This chapter haspresented the background and conceptualization of the problem,indicating the lack of literature, theoretical or empirical, addressing theparents' perspective of the experience of antenatal diagnosis ofcongenital heart defects. The purpose of the study was stated, as wasthe research question. A brief introduction to the research method wasprovided, 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 therelevant literature. Chapter Three will present a detailed account ofthe research method employed to address the research question. InChapter Four the findings of the study will be presented and discussed1 0in relation to pertinent concepts in the literature. The final chapterwill include the conclusions of the study and the implications fornursing practice and education, as well as for further research.11CHAPTER 2Review of Selected LiteratureIntroductionA review of the relevant literature is necessary to situate theproblem of this study in the context of what is known and what is notknown about the experience of parents who learn of their baby's heartproblem antenatally. In this chapter, a critical review of three bodies ofliterature will provide a strong argument as to why it is important todiscover and describe the experience of parents who know about theirbaby's CHD during pregnancy.The Birth of a Baby With a Congenital AnomalySolnit and Stark (1961) were the first to describe the experience ofhaving an imperfect baby. They likened the experience of having ababy with a congenital anomaly to that of experiencing the death of achild. They described the mother's mourning reaction to the loss ofthe healthy child and acknowledged that "there is no time for workingthrough the loss of the desired child before there is the demand toinvest the new and handicapped child as a love object" (p. 526).Mothers of "retarded children" were studied, but it is unclear whetherthe mothers themselves were interviewed -- "the material on whichthis study is based has been collected from pediatric, psychiatric, andcasework contacts with mothers and their defective children" (p. 524).12The strength of this work is that it repeatedly emphasizes that thosecaring for families of children with congenital anomalies must beaware of and understand the grief reaction of the mothers. This studyis limited in that the methods are unclear, fathers are not included, andthe population is limited to "retarded" children.D'Arcy (1968) interviewed 694 mothers in "an attempt to find outfrom mothers how, when, and from whom they first learned abouttheir babies' defects, and to get their opinions" (p. 796). Congenitalheart disease and spina bifida accounted for the majority of thecongenital anomalies diagnosed. Most of the CHD diagnoses occurredwithin the first few months of the baby's life. The mothers describedfour areas of common concerns: the need for a sympathetic andunderstanding approach by the medical and nursing staff, particularlyat the time the baby is born, the importance of the use of simplelanguage in explanations of the baby's problems, the mothers' need toask questions, and the desire for truth, "avoiding unjustifiablepessimism and unrealistic optimism" (p. 798). This study reflects anattempt to learn of the mother's perspective and contains many directquotes from the mothers to reinforce the author's conclusions.Unfortunately, the value of this information is minimized by thefollowing comment:It is appreciated that the mothers' recollection of what they weretold at the time their babies were born was not necessarily reliable,and that the personality of each mother determined to some13extent her satisfaction or dissatisfaction with the way in which shewas treated at the time of her baby's birth (p. 798).The final comment stating it is "essential to ensure as far aspossible that she understands what the doctor is saying" (p. 798) reflectsthe belief that parents must understand things from the healthprofessional's perspective. Although this study attempted to elicit theexplanatory model of mothers, the value of this perspective was notrecognized.Drotar, Baskiewicz, Irvin, Kennel, and Klaus (1975) interviewed 20mothers and five fathers of 20 children with a wide range ofmalformations including "mongolism", CHD, and cleft palate. Thepurpose of the study was to determine the course of parental reactionsto the birth of a child with a congenital malformation and the processof parental attachment. Analysis of the interviews demonstrated fivestages of parental reactions: shock; denial; sadness, anger, and anxiety;adaptation; and reorganization. The authors provided illustrativequotes from the parents as they presented these stages andrecommended early crisis counseling in the first months after the birthto facilitate parental attachment and adjustment. The strength of thisstudy is that it includes the perspectives of mothers and fathers. Itsmajor weakness is that the research method does not reflect thepurpose of the study which was to determine the "course" of parentalreactions and the "process" of parental attachment. Single interviewsare not sufficient to determine a course or process. As well, the14interviews were structured and employed leading questions. Forexample, they asked parents specifically about attachment-- "Does itseem like the baby is yours?" and "When did you start to feel close tothe baby?" There are specific questions about feeling "blue", "angry","irritable" and one of the final questions is: "To review, could you tellme again what stages you remember going through since the baby wasborn?" (p. 712). It is not surprising that the authors were able to comeup with stages despite the methodology, but the findings may not bevalid.Mercer (1974) studied mothers' responses to their infants withcongenital defects by observing five mothers who had given birth tobabies with visible anomalies: Apert's syndrome, a third naris,"mongolism", absence of fingers from right hand and cleft lip. Usingnondirective interviewing and direct observation in thirteen contactswith each mother and baby over the first three months of the baby'slife, Mercer assessed the mothers' behaviors in terms of maternalassessments, maternal contact behaviours, and maternal care activities.Mercer found that mothers demonstrated more attachment behavioursthan aversion behaviours during the first week of their baby's life (79.4per cent as compared to 20.6 per cent) and that these proportionschanged very little over the three-month observation period. Thestudy is limited in that all observations were recorded after theinterviews and although the investigator asked to visit during thebaby's feeding time, "mothers frequently chose a time when the baby15was napping to permit more opportunity for 'visiting' " (p. 135).Consequently, the investigator did not observe interactions betweenthe baby and mother. This study is noteworthy however, in that theinvestigator employed a variety of data collection methods, includingthe provision of direct care for mothers and babies while they were inhospital as a way of observing maternal behaviours. This studyrepresents pioneering nursing research of parental response to thebirth of a baby with a congenital anomaly.Similarly, Waechter (1977) sought to discover factors involved inparental responses to the birth of an imperfect child. Fifty parents ofchildren born with various physical anomalies were interviewed assoon as possible after the birth of their child, usually within the firstseveral days, "as one facet of the initial care planning. Follow-upinterviews were conducted at three-month intervals in an outpatientclinic for handicapped children" (p. 300). The method related to datacollection and analysis is not specified and although the findings arepresented anecdotally with no overall conceptualization of theexperience or discussion of the "bonding problems" referred to in thetitle of the article, this study again, represents an attempt the elucidatethe devastating experience of having a defective baby.The remaining literature pertinent to parents' experience ofhaving a baby with a congenital anomaly is not research based. Jackson(1985) attempts to convey the experience of parents "when the babyisn't perfect" by relating her personal experience. She recounts the16birth of her second child Robert, who was born with hydrocephalus,from her dual perspective as a mother and a pediatric nurse who haddescribed the concept of chronic grief prior to her son's birth (1974).Lynch (1989) discusses parental reactions to the birth of a infantwith a congenital defect in terms of parental expectations, identity,attachment, crisis, grief, and decision making. She refers to pertinentliterature and makes recommendations for nurses working in neonatalintensive care settings. She emphasizes the vulnerability of parents ofa child with a congenital defect and the critical role for bedside nursesin setting "the stage for either prolonged positive or negative feelingsabout health care institutions and caregivers" (p. 57). The parents'need for consistent comprehensive information and continualcommunication with the health care team is stressed.Benkendorf (1987), a genetic counselor, discusses the commonresponses of parents to the birth of an abnormal child. The loss for theparents is emphasized and Drotar et al.'s five stages of grieving areused to discuss her observations and recommendations. The strengthof the article is the emphasis on what can be done for the familieswhose babies are in the Neonatal Intensive Care Unit, but again therecommendations are based on the authors' experience with theseparents, not on the experience of the parents.Although some of the studies related the diagnosis of congenitalanomalies have included CHD (e.g., Drotar et al., 1975), the specificexperience of parents whose baby is diagnosed with CHD during the17neonatal period has not been studied. Several authors describe variousaspects 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 studyaddresses the parents' experience regarding the diagnosis itself.Garson, Benson, Ivler, and Patton (1978), through "informaldiscussions with 260 families of children with CHD at all stages frominitial diagnosis through surgical corrections" (p. 91), found thatparents experienced a loss of an expected normal child and that "thefantasied normal child had to be mourned before the parents were ableto accept the child who was defective" (p. 92). The study was completedwhen many of the diagnoses of CHD were not made in the neonatalperiod, and those that were made at this time usually resulted in a fataloutcome. Consequently, it does not reflect the current situation ofmost CHD being diagnosed during the neonatal period andincreasingly numbers being diagnosed antenatally.Antenatal Detection of Congenital Anomalies Much of the empirical work related to the antenatal detection ofcongenital anomalies is limited to medical and surgical reviews ofantenatal detection program outcomes. Hutson, MacKenzie, Young,McNay, Whittle, and Raine (1985) reviewed the outcomes of 52 fetusesthat were diagnosed in utero in terms of the course of medical and18surgical events. Parents' experience was not studied, but the authorscomment that:one of the disadvantages of this new knowledge is its effects onthe parents. Many couples are now faced with enormous anxietyand dread about their unborn child, often long before delivery.This circumstance needs experienced and sensitive counseling, aswell as expert advice about the effect of the apparent abnormalityon 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 themother, on the baby itself, and on their medical and nursing staff hasbeen ignored in published reports" (p. 623). They present six casereports and then state conclusions and recommendations. Consideringthe long period of time that the mother must wait before the baby isborn, they doubt whether the news of the defect is beneficial for themother if it does not result in termination of the pregnancy."Enormous feelings of fear, guilt, and inadequacy develop, andreassurance that the eventual outcome should be satisfactory may be tono avail. Rejection at birth, both of the baby and of the hospital, is notsurprising" (p. 624). The mothers of the babies in the six cases were notinterviewed, the cases only describing the series of medical events fromtime of antenatal diagnosis to birth, to the confirmation ordisconfirmation of the antenatal diagnosis, to the resolution of thediagnosed problem and to death in one case. The recorded fact that onemother "refused to visit or telephone the hospital for three months"19(p. 623) could account for the conclusion that rejection of the baby orthe hospital could occur. The other conclusions are not substantiated.Costello (1987) describes "the concerns and emotional reactionswhich pregnant women (and their families) experience wheninformed they have a fetal abnormality" (p. 62). As the social workeron a multidisciplinary team involved with 150 families since February1982, in a fetal medicine and surgery program in Colorado, Costellopresents the issues and concerns of the families. She describesinterventions employed by the team of professionals during fourphases, 1) initial phase, 2) decision making phase, 3) delivery phase,and 4) follow-up phase. Costello's account of the "psychosocialmanagement of patients" in their program is detailed and informative,but is based on the experience of the professionals. The value ofCostello's suggestions, born out of "our experience", cannot beminimized considering the lack of knowledge available related to theadvancements in antenatal diagnosis.Nurse researcher, Matthews (1990), has described "the experienceof known fetal malformations" from the perspective of 20 women"who had 'lived' this experience" when referred to the Fetal Medicineand Surgery program in Colorado. Employing a phenomenologicalapproach, Matthews interviewed five women during their pregnancy,three of whom had known about their baby's "malformation" for twoweeks and the other two for six weeks. Fifteen women were20interviewed at various times from one month to 17 months followingdelivery.Matthews (1990) describes an Expectancy of Loss Model, whichincludes six phases: Uncertainty, Verification, Preparation,Reconfirmation, Reparation, and Resilience. She concludes that theinformation the women received during pregnancy regarding theirbaby's congenital anomaly had a positive impact on their experience.More specifically, the information received antenatally provided a basisfor decision making, allowed for the initiation of anticipatory griefreactions, and helped to decrease guilt and blame. As well, motherswere reassured regarding the care their baby would receive at birthbecause the physicians were informed of and prepared for their baby'sproblem before the baby was born. The method employed elicited theexplanatory model of the women who had experienced antenataldiagnosis. A vivid description of their experience was constructed andthe positive conclusions regarding the benefits of antenatal diagnosiswas based on the women's experience. A limitation of the study is thatthe fathers' perspective was not elicited and the congenital anomaliesthat were diagnosed were of a severe nature. All women experiencedthe death of their babies, nineteen babies dying shortly after birth, onebaby at four days of age and one within the neonatal period.Examples of some of the non-research based literature include thatof Clark and DeVore (1989), and Lorenz and Kuhn (1989). As indicatedearlier in the discussion these articles present the perspective of21physicians, perspectives from the professional sector, not from thepopular sector.Green (1988) suggests how nurses can help parents through thecrisis of prenatal diagnosis, using anecdotal accounts of three couples toillustrate the needs of these parents. The recommendations, focusedon helping parents with their grief and loss, reflect the assumption thatmost babies diagnosed with health problems antenatally do notsurvive. This is not the case with the antenatal diagnosis of congenitalheart defects.Antenatal Detection of Congenital Heart DefectsLiterature related to the antenatal diagnosis of CHD is limited tomedical studies that review the experience that has been gained withthe relatively new technology of fetal echocardiography. Allan and hercolleagues report on findings gathered over an 18 month period with1757 fetal echocardiograms on 989 antenatal patients (Crawford, Chita,& Allan, 1988). Cardiac anomalies were accurately predicted in 74cases. A false negative diagnosis was made in 16 cases, the majorityinvolving minor anomalies with a good prognosis and a survival rateof 81%. The authors conclude that accurate diagnosis of congenitalheart disease can be made during the second trimester, fromapproximately 16 weeks gestation to term. Oberhaensli et al. (1989)review their experience in much the same way with similar results.22No literature was found which addressed the experience of parentswho learn of their baby's congenital heart defect antenatally.Synthesis of Current KnowledgeSome empirical literature addresses the experience of parents wholearn of their baby's congenital anomaly at birth. Although themethods are frequently unclear or weak, this body of work representsefforts to elicit parents' perspective for the planning and providing ofhealth care. Literature regarding the experience of parents who knowabout their child's congenital anomaly antenatally, represents theperspectives of the health care professionals, not the parents.Matthews' empirical work represents the kind of research that isneeded as the field of antenatal diagnosis continues to develop. Shediscovered and described the experience of women who found outabout their baby's congenital malformation during pregnancy. Similarresearch related to the antenatal diagnosis of congenital heart defects isnecessary in planning programs to meet the needs of these men andwomen and their families.23CHAPTER 3MethodsIntroductionThe research question directed the investigator to the naturalisticresearch design of phenomenology. "Phenomenology is the study ofhuman experience from the actors' particular perspective (Knaack, 1984p. 107). The goal of phenomenological research is "to understandhuman experience from the individual's perspective. To accomplishthis, the investigator must set aside any preconceptions about themeaning of the event/experience and open himself fully to thephenomenon as it presents itself" (p. 108).Phenomenology is congruent with the conceptualization of theproblem that is based on Kleinman's cultural system model. Thecultural system model gives direction to elicit the explanatory modelsof the participants in health care interactions. In obtaining perceptionsof parents' experiences of knowing about their baby's heart defectantenatally and attempting to identify common themes in theseexperiences, the researcher hopes to better understand thephenomenon of antenatal diagnosis of CHD so as to benefit othersliving the experience.Sample Selection and Selection Criteria Theoretic sampling was used to obtain participants for this studyas the researcher was "familiar with the setting and the actors" (Morse,241986, p. 184). "The criteria for sample selection requires that theindividual have experience with the topic under investigation and beable to communicate it" (Knaack, 1984, p. 111). All parents, therefore,who found out about their baby's heart problem during the antenatalperiod met the criteria for selection. In addition, because the researcherwas interested in the postnatal experience as well as the experienceantenatally, a second criteria for selection was that at least six weekshad 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 thenames of appropriate parents from the cardiologist performing the fetalechocardiograms. The clinic nurse contacted these parents after theirbaby was born to assess their interest in study participation. Allfamilies approached by the cardiology clinic nurse were enthusiasticabout the study. She obtained permission for initial contact (AppendixA) from them and the researcher then contacted them to offer moreinformation about the study and to arrange for the first interview ifthey agreed to participate.Description of the Participants Although both parents' participation was not required, bothparents were present for all of the interviews, except for two of the25second interviews where the fathers were absent. A total of sixteenparents of eight children with CHD were interviewed. Demographicdata were collected to provide a descriptive profile of the participants(Appendix D). Hall Johnson (1986) states that the extent of familyreactions to the birth of a child with a physical disability differs fromfamily to family. She identifies some influential factors, of which thefollowing were addressed through the demographic data collection:family preparation before birth, family economic status, the extent ofthe anomaly, family cultural background, age of the family and itsmembers, and sex of the child.The age range for mothers was 21 to 37 years and for fathers was 23to 42 years. All were two parent families, the couples having beentogether for 2 to 13 years. One couple separated during the timebetween the first and second interview. Family income ranged fromless than $25,000 to greater than $55,000 per year. Most parents werehigh school graduates, five with some college or university educationand four parents (three fathers and one mother) were graduates fromcollege or university. One third of the parents were born outside ofCanada in countries where English was not the first language (i.e.,Croatia, Netherlands, Philippines, Slovenia). All parents had Englishlanguage skills sufficient for the interview processSix of the eight couples had one other child besides their childwith CHD. Two couples had another child with CHD and one of these26couples also had a child who had died. For two couples, their babywith CHD was their first child.The age of the child diagnosed antenatally with CHD ranged from2.5 to 24 months at the time of the first interview, the average age being6.75 months. Six of the children were boys . The antenatal diagnosiswas made as early as 17 weeks and as late as 35 weeks; the average timeof diagnosis was 27.6 weeks gestation. All babies except one, were bornat the tertiary perinatal hospital where the antenatal diagnosis wasmade and six of the babies, including the one that was born at anoutlying hospital, were transferred to the pediatric hospital shortly afterbirth. Using a four category classification of CHD, where a classificationof one represents the least serious and most treatable heart defects anda classification of four represents lethal inoperable heart defects, threebabies 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 ProceduresData were collected using unstructured and semistructuredinterviews with one, but most often both parents, in their home or at alocation of their choosing, at least six weeks after their baby's birth.Once permission for initial contact was obtained by the cardiology clinicnurse, the investigator contacted the parents by phone or in person, astwo of the couples were contacted while their babies were still in27hospital. All potential participants contacted by the investigator keenlyagreed to be participate. Time and location of the interviews wasplanned according to the parents' wishes in an attempt to minimallyimpose on their family life. The investigator acknowledged the busylives of the parent participants and reassured the parents that theinterview could be rescheduled at short notice if another time wasmore convenient. The first interview with one family was changedseveral times as their child was sick and the family was experiencingother stresses as well. Most interviews were conducted in the parents'home in the living room or around the dining room table. Fourcouples resided more than a one hour commuting distance from thehospital; four of the eight interviews conducted with these parentsoccurred at the pediatric hospital. The investigator travelled fourhours on two occasions to conduct the other four interviews with theseout-of-town participants. Interviews conducted in the hospital weredone in a large playroom or conference room where the parents andresearcher could sit comfortably on couches and the children could bepresent playing or being held by one of the parents. Children wereusually present during the interviews. The unhurried nature of theinterviews allowed parents the freedom to attend to their childrenduring the course of the interview, whether to feed the baby or toensure the older child was occupied. Interviews ranged from 45 to 90minutes, with first interviews generally being longer than the secondones. The interviews were audiotaped and transcribed for analysis.28Initial interviews were unstructured. Open ended triggerquestions (Appendix C) initiated the interview. In most cases only thefirst trigger question was used, as the parents willingly and vividlyrecounted their experiences with minimal prompting. The researcher"tracked" topics during the interview that could potentially requirefurther elaboration and invited the parents to further discuss thesetopics only after they had finished expressing their thoughts; "trackingserves to minimize the interviewer's interference with the naturalflow of subjects' conversations" (Sandelowski, Davis & Harris, 1989, p.81).Second interviews were semistructured in order to clarify issuesdiscussed in first interviews and to validate the findings. Little newinformation emerged during second interviews. The researcher alsoused this interview to validate the themes that had emerged from theinterviews with all participants.The investigator had previous experience as a research assistant ina phenomenological study, in which she interviewed parents ofchildren with complex health care needs living in the community.The interview process is foundational to the phenomenological studyand must be reflected upon at many points during the inquiry. Theresearcher journalled pertinent details regarding the bracketing processprior to each interview and also recorded reflections of each interviewthat may not have been captured in the audiotaped interview.29Data Analysis Data were analyzed simultaneously with data collection accordingto the following steps based on Giorgi's (1983) data analysis steps, asoutlined by Ornery (1983, and on Anderson's (1992) recommendationsfor phenomenologic data analysis:Step one. The entire transcript of the interview was read by theresearcher to gain a sense of the whole. Errors were identified andcorrected by listening to the recorded interview and checking thetranscript against the tape.Step two. The transcript was reread, this time identifying whatwas not understood by the researcher, as well as that which was notclear and not sufficiently explored. These areas were noted on thetranscript 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, thusidentifying the individual meaning units. This preliminary dataanalysis was based on the data from the interview transcript only. Theresearcher bracketed her preconceived ideas and experiential base atthis point.Step four. The researcher then reflected on the meaning units andtransformed the meaning from concrete language into broaderconceptual terms. Data from other participants in the study werecompared and similarities and differences were noted.30Step five. The insights were integrated and synthesized into thedeveloping descriptive structure.Step six. The researcher returned to participants for the secondinterview, clarifying that which was not understood and encouragingelaboration of areas the researcher noted from the first interview withthe same participants. The researcher also shared the developingdescriptive structure with the parents for the purpose of validating thefindings.Step seven. Steps 1 to 4 were completed with the secondinterview and then the first and second interviews were compared.Redundancies in the meaning units were eliminated, clarifying orelaborating the meanings of the remaining units by relating them toeach other and to the whole.Step eight. Additional insights were integrated and synthesizedinto the descriptive structure.Trustworthiness Criteria As reliability and validity are the criteria of rigor in quantitativeresearch, credibility, transferability, dependability and confirmabilityare the trustworthiness criteria essential to qualitative research(Lincoln & Guba, 1985).CredibilityActivities employed to increase credibility were "prolongedengagement" and "persistent observation". Although a minimum of31two interviews was planned for each couple, the researcher advised theparticipants they were free to contact her with further thoughts andcomments regarding their experience between interviews or they couldnote them for discussion at the next interview. Parents frequentlyrecounted things during the second interview that they had thoughtabout since the first interview, stating that they had not wanted toforget to raise the matter. Lincoln and Guba (1985) identify "goingnative" as a potential threat to credibility related to prolongedengagement. As much as the investigator wants to have sufficientopportunity to hear from the participants, prolonged engagement canput 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 reflectivejournalling by the investigator.As prolonged engagement provided scope to the inquiry,persistent observation provided depth; "The purpose of persistentobservation is to identify those characteristics and elements in thesituation that are most relevant to the problem or issue being pursuedand focusing on them in detail" (p. 304). This was accomplished by the"tracking" of topics during each interview, and by asking participants toelaborate on topics discussed in previous interviews. The relaxednature of the interviews allowed the investigator to take time duringeach interview to reflect on what the parents had recounted, oftenwhile one or both parents got up to attend to their children or while32sipping a cup of tea, graciously provided by the parents. The parents'keen willingness to share their experience of knowing about theirbaby's CHD antenatally allowed the researcher to pursue topics in anin-depth way. A potential threat to credibility related to persistentobservation is that of premature closure, that is, the investigation isterminated before the full picture is obtained. In this study, theparents' vivid recollections of their experiences and responses wereoften repeated word for word from the first to the second interview.The investigator noted this as an indication that the experience wasbeing shared honestly and consistently and, that a point of saturationregarding a description of the experience was being approached."Member checks" were also employed, this being "the most crucialtechnique for establishing credibility" (Lincoln & Guba, 1985, p. 314).Informally, participants were asked to confirm data and findings thatthey provided as the interview progressed. The investigator frequentlysummarized what the parents had said and usually the parents'response was "that's right", or "that's it exactly". During the secondinterview, the investigator, after clarifying her questions from theanalysis of the first interview, summarized her impressions of thecouple's experience. Again, the parents validated the investigator'sfindings by confirming that her description accurately reflected whatthey had experienced.Formal checking involves presenting the findings to"knowledgeable individuals" from the source group (Lincoln and33Guba, 1985). Because the "source group" in this study was relativelysmall to start with, the overall findings were presented to six of thecouples during their second interview. There were many confirmingnods of the head, smiles of recognition, and expressions of agreementwith the description of the experience as it was presented to them bythe investigator. There was a sense of the parents wanting to meet theother parents who had such a similar experience. There were alsoquestions about the other families' experience which could only beanswered in a general overall fashion.Formal checking was also done with two couples entered into thestudy after the description of the experience was validated by the firstsix participant couples. These four additional parents validated thedescription. As well, further data were collected from these couples asthey related their own personal experiences with the antenataldiagnosis of their baby's CHD. The final description was furthervalidated with one of the final two couples.TransferabilityTransferability, in the strictest sense, cannot be established by theinvestigator, because the true test is when "other people (otherresearchers or readers) can recognize the experience when confrontedwith it after having only read about it as a study" (Sandelowski, 1986, p.30). The researcher "can provide only the thick description necessary toenable someone interested in making a transfer to reach a conclusionabout whether transfer can be contemplated as a possibility" (Lincoln &34Guba, 1985, p. 316). The final description of the experience therefore,was presented to a clinical nurse specialist who had worked withfamilies of children with CHD for several years and as well, hadexperienced a false positive antenatal diagnosis during her ownpregnancy. She stated that the described experience was recognizableand familiar. As well, the findings were shared with a nurse whoworks with children born the congenital anomaly of spina bifida andtheir families. She stated how amazed she was with the similarity ofthe description with her observations of parents who find out abouttheir baby's spine malformation antenatally. "This is so familiar, sofamiliar", "this is classic", and "very very similar" were expressions ofher confirmation of the transferability of the findings.Dependability and ConfirmabilityDependability and confirmability are jointly established through aclearly articulated audit or decision trail that describes the study fromits beginning to its end, as reflected in this document. Related to this isone final technique that was employed to establish trustworthiness,that of a "reflexive journal" in which the investigator recordedinformation about "self" and "method" (Lincoln & Guba, 1985, p. 327).The trustworthiness of the phenomenological method isenhanced through bracketing, the process whereby the researcher shiftsfocal attention by reflective orientation and suspends theoreticalassumptions, interpretations, labels, categories, and judgments thuseliminating apriori assumptions (Pallikkathayil & Morgan, 1991, p.35196). Reflections on the interview process as outlined in the "DataCollection Procedures" section were recorded in the journal, as well asmethodological decisions and rationale (Lincoln & Guba, 1985).Procedures for Protection of Human RightsParticipants were fully informed and received a written statementregarding the nature and intent of the study, their rights as participants,and the responsibilities of the researcher (Appendix B). Writtenconsent (Appendix B) indicating they had received this writtenexplanation and were agreeing to participate in the study, was obtainedfrom each participant before the first interview was conducted.As there was the possibility for the researcher to have had contactwith the potential participants of the study during their baby'shospitalization, the cardiology clinic nurse, whom parents had notmet, approached them to elicit their interest in study participation.This was to ensure that they did not enter the study out of obligationbased on their relationship with the researcher, who is the cardiologynurse clinician.Because of the personal nature of the interviews and potentialpersonal risk of disclosure, the participants were assured that theycould withdraw from the study at any time. Identifying informationwas not present on the transcripts and transcripts were only read by theresearcher and thesis committee. Subjects will have access to theresults of the study.36Summary The naturalistic research design of phenomenology, congruentwith the conceptualization of the problem that was based onKleinman's cultural system model was employed to discover anddescribe the experience of parents who knew about their baby's heartproblem antenatally. Sixteen parents of eight children with CHDparticipated in the study. Simultaneous data collection and analysiswas carried out by the investigator with a total of fourteen interviewsconducted. The description of the parents' experience, which will bepresented in Chapter Four, was validated by the participants in thestudy, as well as by others in the health care field who have workedwith these and similar families.The method enabled the investigator to produce a "thick"description of the experience from the parents' perspective which willbenefit others who will be similarly affected by the antenatal diagnosisof their baby's CHD. As well, the phenomenological method providedsignificant benefits for the participants involved. Several parentsexpressed their appreciation of the opportunity to talk about theirexperiences. They acknowledged the unique opportunity that theinterviews provided them as a couple in that they could hear abouteach others' experience. One mother, in the initial phone contact,stated that she was so glad that someone really wanted to hear aboutwhat she and her husband had been through. This same mother asked37for a copy of the interview tape, intimating that it represented asignificant experience for her and her husband.The method also allowed the inclusion of participants whose firstlanguage was not English. Two of these parent participants inparticular were apologetic about their English. The prolonged andopen-ended nature of the interviews allowed them adequateopportunity to formulate their thoughts in words and non-verbalexpressions that clearly depicted their experience, despite their feelingsof inferiority regarding their English language skills. One motherstated, "I don't know it's, well I'm not really I can't really talk that goodEnglish. 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 wordsand bodily expressions of all parents in the study, provided thebountifully rich data that lead to the description of their experience ofknowing about their baby's heart problem antenatally that will now bepresented in Chapter Four.38CHAPTER 4Presentation and Discussion of the FindingsIntroductionThe goal of this study was to discover and describe the experience ofparents who knew about their baby's heart problem before the baby wasborn -- to elicit the explanatory model of the parents so that we, ashealth care professionals, can more effectively provide care for thesefamilies. As the parents' perspective on the meaning of this experiencewas gained, it was evident that while each parent's experience wasunique, there were common themes. Although the small andsomewhat diverse sample may have placed some limitations on thefindings, 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. Thecommon threads in the participants' accounts enabled the investigatorto describe the experience of parents who knew about their baby's heartdefect antenatally.The experience of parents who knew about their baby's heart defectantenatally, was conceptualized in terms of how they lived through ormanaged three phases. The first phase, "Suspicion to Diagnosis",accounted for the time from when there was suspicion raised regardingthe baby's heart to the time that a fetal echocardiogram was done andthe suspicion was confirmed (a congenital heart defect was diagnosed).39For most parents, this period seemed to last forever, even though itmay only have been a few days in duration. It was also a time ofintense emotional responses and uncertainty as they hoped for the bestand yet prepared themselves for the worst.The second phase, "Diagnosis to Delivery", was best characterized byone mother's statement; "and so from there [the day of diagnosis] wepicked up the pieces." Picking up of the pieces involved allowing thenews "to sink in" and then a rallying to go on with the rest of thepregnancy. The emotional responses were less intense than in the firstphase, and often occurred in a roller coaster fashion, "one day I wouldbe fine and the next day I would cry and cry". Uncertainty alsocharacterized this phase.The third phase, "Birth to Relief", began when the birth of thebaby was imminent, that is, labour began naturally or by induction, andended with the final confirmation of the antenatal diagnosis after thebaby was born. The parents, most of whom simultaneously preparedthemselves for worst and the best, were in most instances surprisedthat the baby's condition at birth was better than they had expected.In this chapter, the parents' experience will be described in termsof these three phases which represent the anchors of the analyticframework that has been constructed to describe the parents'experience (See Appendix F). The main themes of each phase will bepresented and relevant concepts from the literature will be discussed toenhance understanding of the findings, to challenge the findings, as40well as to demonstrate that there are aspects of this experience thathave not been accounted for in the literature. The parents impressionsof their overall experience will also be presented.Phase OneWaiting for the "Brick Wall": Suspicion to DiagnosisParents vividly recounted what it was like for them from whenthey first found out that there was a possibility that their child had aheart problem, to the time that this suspicion was confirmed by thefetal echocardiogram at the tertiary referral center. One father describedthis as the "the toughest part" of their whole experience, "the wait, Imean that wait just killed me." For other parents things seemed to behappening fast as arrangements were made for their fetalechocardiogram. This phase of their experience consisted of severalkey pieces.Suspicion Raised Each couple had distinct recollections of the time of arousedsuspicion regarding their baby's heart. For one couple, a routineobstetrical 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 fetalechocardiogram. The mother stated that although she thought thatthere might be a problem, she just could not believe that there would41be a problem. Her uncertainty was reflected in her 'dialogue' withherself:M:*^I thought that he was strong inside me and I told myhusband I know there's something wrong with this baby but, you,the doctor didn't tell me something was wrong, but I don't thinkthere is and the doctors examined him, you know, and then hewas checking him. They said that everything had been goingnormal. As this mother struggled to make sense of the raisedsuspicion, her husband had decided that all was not well with thebaby. "Well that's what I said to M, I said, you know if this wasn'tsuch 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, hadseveral ultrasounds to assess the baby's status and suspicion was raised.M: Then we went to [local hospital] and then they put themonitor on and everything and the baby is moving. And, youknow, said he is okay and when I have an ultrasound every nowand then and you know they have a small screen and you can'treally and the hospital is under renovation. So you know theyhave to put the machine upstairs in your room to do theultrasound there ... and then I think they find something youknow, 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 KeyF:^= FatherM: = Mother[ ] = Non-verbal of F or M and omissions to preserveconfidentiality( ) = Researcher42imagine that anything could really be seen considering thesmall size of the ultrasound screen; "they can't, I can't hardly see thething like cause it's really very small screen." Her uncertainty was alsoevident 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 ahundred percent sure yet. So I'm not thinking really a hundredpercent that there's nothing, there's something wrong with thebaby 'til I went to the [tertiary hospital] and had my ultrasound.Another mother had an ultrasound because she was "small fordates" and was unprepared for suspicion to be raised regarding herbaby's heart.M: I didn't know what to expect ... it was just routine to see whyhe was so small and it was just like one thing and it snowballedinto everything else .... he told me that he has fluid around hisheart and that's all he told me and he'd like me to go back to mydoctor and he made arrangements to go over to the is it Sick Kidshospital?This woman spoke vividly about her referring doctor telling hernot 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 ofcourse there's something to worry about otherwise I wouldn't be,you know, go to my doctor in the morning, ultrasound, my doctorand then, you know, a hospital in [city of tertiary center], youknow, in a couple of days and, you know, the thing that scared metoo. They were always emergency this and emergency that, like,emergency ultrasound, emergency this and it's like emergency,what's the emergency?43Her husband commented, "When they leave you in the dark,when they tell you not to worry, that's the worst thing because that'swhen you worry more." This interaction between the couple and thedoctor caused them to feel that something was wrong with their baby.For another couple, comments by the referring doctor "set theirminds at ease." The mother recounted the doctor saying, "somepeople's hearts lean to the right. It's nothing to worry about but wewant you to come back for this another ultrasound, an echocardiogramon the fetus."The time of raised suspicion, therefore was a time of uncertainty.Parents tried to convince themselves that there really would not be aproblem, while at the same time were alarmed at having to go for afetal echocardiogram and wondering whether a problem really wouldbe discovered.WaitingThe time span from raised suspicion to the fetal echocardiogramappointment varied. The two couples with previous children withheart defects, were referred for a fetal echocardiogram at 16 to 20 weeksgestation. For them the wait for news about their baby's heart beganeven before they were pregnant and each couple dealt with this perioddifferently. One couple thought because they had already had twochildren with heart problems it would not happen again. The motherstated, "I think because we'd already had two children with heartproblems I thought it was pretty rare ... he [the doctor] said it was44possible, but I guess I didn't quite believe it was going to happen." Theother mother who already had one child with a heart problem wasmore skeptical as she considered her previous experience. "Well, mydaughter had the same problem, a heart defect. So I was sort of I had aidea 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 rangedfrom a couple of days to three weeks, and their feelings about that timespan varied. For some, things happened fast as in the case of twocouples who were referred from a distance.M: ... so I went back to my doctor that morning and day after Iwent to [city of tertiary center] .... It happened so fast .... It happenedso fast.F: Got home, an hour later the phone rings. This was aTuesday. He [referring physician] says, "Thursday morning you'rein [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 fetalechocardiogram appointment felt "like an eternity." One couple wasinformed by telephone that the obstetrical ultrasound had raisedsuspicion regarding their baby's heart and were given an appointmentfor a fetal echocardiogram in six days time. They called back to theirfamily physician for an earlier appointment, but were informed thatthe fetal echocardiograms were only done on Thursdays. They wouldhave to wait until the following Thursday. The father stated that, in45retrospect, he wishes that they would not have been told about thesuspicion until the day before a fetal echocardiogram appointmentbecause the wait was the worst part of their whole experience as theyagonized over what they would find out. "It's like someone sayingyou've got cancer, but you've got to wait a week and a half to find out ifyou really do."As much as the parents were anxious about what would transpireat the echocardiogram appointment, many of them tried to remainpositive, one partner often trying to encourage the other to be positive."He says, 'Think positive, think positive" One mother, trying toremain positive despite the fact that her sister had a baby die from CHDsaid, "You know even when we went there [the fetal echocardiogramappointment] I was even going to buy a bottle of champagne andeverything because I thought the chances of this happening with [hersister] and me, I just thought, no way."The longest wait was three weeks; "practically three weeks to amonth they made us wait". This couple also tried to arrange an earlierappointment without success and expressed how "awful" this waitingtime was. While waiting, parents were preparing for the worst, yethoping 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 doanything", and yet also hoped that "it [the suspected defect] wasn't whatit was". Her husband would say "believe it. You know they're going tobe able to do something" and insisted that think positively.46One father who had a previous child with CHD prepared himselffor his second child having a heart defect and, although he did notwant the echocardiogram to show a heart problem, "that was almosttoo good to hope for." The other father who had previous childrenwith heart defects decided he would not worry about the possibility ofCHD.F: I think after what we've been through we're learning that wecan deal with things as they come because I think if you starttrying to imagine or plan ahead for something you don't evenknow 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 EchocardiogramOne mother recalled the exact date of the echocardiogram and forher that was "the scariest day, that was then, one of the scariest days."Many women commented on the length of time that the fetalechocardiogram took, as well as the nature of the experience. For onewoman the procedure was a "most gruelling three hours .... veryfrightening .... it was very frightening .... this experience was veryoverwhelming."Several mothers recounted how long the procedure was:M: And then, well, I have [the pediatric cardiologist] and somespecialist there to look at, you know the picture and the heart beatof the baby and all this stuff and he was, was very long, mygoodness.47M: One hour, you know they look and look and look and stayedthere for one hour and after that, you know [pediatric cardiologist]and he told me that there's something wrong with the baby. Youknow the baby does [said with emphasis] have a heart problem.Except in the two cases where the couple had a previous childwith CHD, all fathers were present with their wives for the fetalechocardiogram. The father whose baby's heart was being examinedfor the missing chamber, described his experience at theechocardiogram as:F: ... but then coming down here was just hell ... Is it [the heartchamber] there? Is it not there? But then you're only worryingabout that chamber right. Then when I'd seen the screen and I seefour of them, I'm like [Sighs] whew, they're all there. And thenall 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 andthen all of a sudden.Again in the second interview this father recounted theechocardiogram experience: "So I thought oh, everything's okay, it'sall there, they said no, everything is not [said with emphasis] okay."The father who felt that the wait from suspicion to theechocardiogram was the hardest part of the entire experience describedhow at the time of the echocardiogram he waited for the doctor to lookat the heart for "20 seconds" and then asked if the heart was normal, "Imean I'd been waiting long enough." The fact that the doctorimmediately responded that the heart was not normal brought thefollowing response from this father: "and then as soon as he said itthat quick, I knew there must have been quite a serious problem forhim to be able to tell me that quick." His wife wanted to cry when she48heard the doctor say that the heart was not normal and yet felt that shehad to keep in control.M: But that was hard for me because I was laying there withthem doing this and I was trying to stay calm and all of that andthat 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 youknow like I couldn't tell what they were looking at and I'm sureyou know if I got upset then maybe he [the baby] would havestarted moving around.One mother recalled that as the ultrasound progressed she wassure that she and her husband were going lose their baby.M: We went in and there was the pediatric cardiologist, [name ofdoctor] and there was [name of doctor] who was an obstetricianand of course [the ultrasound technologist] and, and they weretalking and noticing that this tilt and they proceeded to do threehours of intensive ultrasound. During that time [the baby] was,began crammed in a corner which apparently was a better positionthan she had been in the week before. But she, they kept onspeaking about how she wasn't cooperating, making little jokesabout how we were going to have this behavior problem with her.And they were trying to be light about it, but it was the mostgruelling three hours because during that time, it was veryfrightening. They kept on trying to get her to change her positionso that they could see, that was making things more complicated.The fact that she was reversed was making things morecomplicated and for three hours, also we had to change rooms togo into a coloured ultrasound. So for three hours they mumbledto each other. They told us that they would make full disclosureat the end, once they figured out what's going on and they wouldmake a decision at the end, but they were not going to divulge asthey were going along what they were mumbling about. And itwas very frightening. I know we felt like we were going to loseher as things progressed because they were mumbling and wewere hearing bits and pieces.49All parents came to the echocardiogram appointment uncertain asto what the outcome of the assessment of their baby's heart would be.The process of the echocardiogram itself seemed to add to theiruncertainty. The length, "the mumbling" in "medical terms that we'dnever heard", the "looking and pointing at the things there" and "thenthe machines are going off and they're doing the sounds and, it'sintimidating" did nothing to reassure them during this difficult part oftheir experience. Unfortunately, their uncertainty was not alleviated toany great extent by the news they received concerning diagnosisbecause certain outcome predictions could rarely be made concerningtheir baby's confirmed heart defect.Suspicion Confirmed When the fetal echocardiogram was completed, parents weregiven information about the results. Parents' descriptions of this partof the experience were on the whole, brief and sketchy. One couplerecalled being told about "all the holes in the heart and everything thatwas wrong", but also recalled that they were not able to take in theinformation that they were being given.M: The doctor explained to us, you know ... about the picturesand he [the pediatric cardiologist] showed us what was happeningand stuff, but it was, it was just kind of going like this [handgesture showing it going over her head]. It was too much to takein .... we just didn't really kind of hear.The mother who thought, as the echocardiogram progressed, thatthey would lose their baby said that:50M: They [the doctors] drew pictures for us and they told us, Ican't remember what they told us. I think they told us she had aVSD at that time. Yeah that was what the original diagnosis was.... They weren't sure that she was going to come out, when shecame out whether she was going to come out pink or blue .... butthey drew pictures, you know, tried to be comforting and sent uson 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 wasborn. In most cases, the doctor told parents what might be done for thebaby depending on how the baby was at birth and many parents, such asthis father, felt some relief: "Okay, this is what's wrong. That was kindof a relief. And then they started telling us what can be done."Before the echocardiogram appointment, many parents preparedthemselves for the worst. Even though suspicion of the heart defectwas confirmed, they recalled their sense of relief as they heard thediagnosis 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 sothat gave us hope in that aspect."The suspicion to diagnosis phase was recalled most vividly incomparison to the experiences of the other two phases. This wasevident in the second interviews when parents recounted word forword as in the first interview, aspects of their experiences, as well astheir responses during this phase.51The Parents' Responses(So if you think, if we just go back now, if you think of the timewhen you first found out [about your baby's heart problem], whatstands out in your mind?)F: A brick wall [emphasis added].Parents vividly recounted their responses to this phase of theirexperience. They described intense feelings that were unmatched inthe rest of their experience, connoted by the "brick wall". Parentsdescribed their experience as "feeling terror" and "being terrified":F: It's a feeling of actually, you know, thinking about FreddieKruger 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 aprevious child with CHD, were shocked at the diagnosis of their baby'sheart problem. They had not been prepared for such news and eachone gave reasons for not believing that their baby would have a heartproblem. Some had no family history of heart problems. The couplewho had two previous children with heart defects were shockedbecause they were sure that it would not happen a third time. Othersemphatically expressed how healthy they were and how "good" theyhad been during the pregnancy: eating right, living carefully, notdrinking, not smoking or taking drugs --"I didn't even take an aspirin."In their minds, vigilance during pregnancy precluded them fromhaving a baby with a health problem. For example:52F: I remember when we were painting the house when M waspregnant, she didn't even come over here when we werepainting.M: We have a huge cherry tree in the backyard, I wouldn't eveneat the cherries off there because of the chemicals that might havebeen sprayed on there. You know it was just, tried to be so careful.One father talked about how "perfect" and "beautiful" his first childwas and said, "Just like [first-born] so we're anticipating again just likeJ, and then the eighth month there it was .... suddenly, all of a suddenone month before the delivery of the baby, you've got a potentiallyvery ill baby." They were shocked because they had a healthy baby andanticipated another healthy one.Parents' "going to church every Sunday" and "only asking for twochildren" were also cited as reasons that they were not at all preparedfor a problem and thus contributed to their shock and disbelief at thediagnosis of CHD."Maybe it was my fault". Parents in their shocked state could notbelieve 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 theymulled over this question, they inevitably questioned their own role inthe heart defect's occurrence. What had they done to cause the heartdefect in their baby? Answers to this question varied and parentsdebated their conclusions within and between themselves. Onemother could not help but think that she was being punished forsomething she had done in the past, "like maybe I went through a stop53sign one day and that's my punishment for doing this, you know, orsomething I did in my past."Another mother, who was depressed during her pregnancyremember her mother telling her about a woman who was depressedand had two children with heart problems.M: So that's what my parents always tell me, you know, if you'redepressed, you know, like during your pregnancy might be, likeheart. The heart will be affected or something. That's why before,I'm not pregnant when she's always telling me that. But now thatI have this [baby with a heart problem], I said oh my God, mymother'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 mightreally affect somebody when she's pregnant."Another mother was convinced that her smoking and drinkingover Christmas was the cause of her baby's heart problem. Herhusband countered her statement with "One or two, two of thoseflimsy things you drink? ... I don't think so." This mother alsowondered if she had gotten pregnant too soon after her first baby whichhad 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 sixmonths and I'm pregnant. Cause really your body needs to, torelax and say got to go back in shape first, you know, butsometimes it happens I tell you.54Her husband's response to this was, "Oh I told her no, you, you're, youknow, total B.S." Fathers played an important role in reassuring theirwives that they had not done anything to cause the heart problem.Deliberations about their responsibility for their baby's heartproblem were accompanied by expressions of self-doubt:F: I felt inadequate, you know that maybe it was my fault ... It'sjust a feeling of inadequacy that you can't. That you didn'tperform properly and make a normal baby, you know. Or you'vedone something wrong.When all possible causes were discussed, many parents returnedto the cardiologist's explanation that the heart defect was most likely arandom event. One father reminded his wife of the incidence of CHD,intimating that it just happened because it occurs in a certain numberof babies each year. Her response was, "I know ... why ours? Why can'tit be somebody else?" To this the father responded, "And if ithappened to somebody else, they'd say 'why, why us?'" When parentscould 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'tknow, just why my baby?" and "You still think, why, why has thishappened you know, that question will probably always be there.""I couldn't stop crying". Many parents recounted how upsetthey were when they heard the news of their baby's suspected heartdefect and then when the suspicion was confirmed.M: I was just hysterical and then I came home and poor F. Icame in the door crying my eyes out and I couldn't even get outwhat's the matter.55M: I was really scared and I started crying and I just, cause youdon't know what that means, and, like you ... I just wasn't used toit and I wasn't ready for something.M: All these things are happening to your baby and that aregoing 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 homehere, that's when everything and I cried and cried and I, youknow, I was just so upset. I felt like a real idiot because you don'tknow why you're crying. You just seem to dwell on all thenegative things.One father talked about how much he cried, "lots of tears wereshed over it". His wife was hesitant to talk about her tears andalthough she later confirmed that she had cried, in her initialdescription 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'tgoing to, you know, I wasn't [pause] then he hugged me and thenyou know.Others described feeling "very depressed", "out of control", "reallyupset", "unstable", "all worked up", and "scared". Parents worriedabout the baby's heart problem and about the effect of this worrying onthe baby. A diabetic mother stated, "so it all added to, that that, myinsulin was increasing by the minute." Another mother recalled herhusband telling her that she should stop crying because it might beharmful for her and the baby, "it will just affect the whole family."56This couple's baby was born a month early and the mother attributesthe early delivery to her upset emotional state.The two couples who had previous children with CHD were alsoupset with the news their baby's heart defect, but drew on theirprevious experience with CHD in coming to terms with the diagnosis.For the couple who was sure that their second child would also haveCHD, the news was what they had expected. The mother rememberedthinking:M: Well it will probably be similar to [first child with CHD]'sproblem and I'll have to go through the same thing and I was veryconfident that the doctors knew what they were doing and thatshe was fine. So it didn't really affect me that much, but youknow you do have concerns to make sure that everything goesfine.Her husband recalled:F: I didn't like to hear the news, but the way we figured it out isthat'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 thistime of finding out about their baby's heart problem. It was alwaysfocused on someone else other than each other or the baby. For onefather it was anger towards the person he was staying with when hefirst heard of his baby's heart problem.F: I was staying with my uncle at the time and he kept, he'skind of a callous person. He doesn't care about anything, buthimself. So he kept bugging me, bugging me and that's how I lostit, you know. I just basically lost it. I told him to shut up. I said,"I'm going to lose my temper."57This father made it clear that this anger was uncharacteristic of himand that it was not directed at the baby.F: Angry (chuckles) angry like I don't know, to actually explainit. 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 Iwould probably hurt them pretty bad and I'm not a violentperson.... It's a feeling of, even now still, that you want to go out,you know, onto the balcony and scream. So the whole entireworld can hear you do it.... That's the amount of anger you wantto release. You know, you just want it all to come out.... It's justan angry feeling. I don't know who at, not at [the baby]. I'm notangry at, I love [the baby], but Pm angry. I'm still angry a little bit Ithink.One mother was "mad" and wanted to blame someone. Despiteher sister having a baby with CHD that died within twenty four hoursof birth, this woman had been reassured by her family physician thatCHD would not happen in her pregnancy.M: Like I said, when we found that out I was so mad. It was likeI wanted to blame somebody. And see I wanted to blame I guesswhoever ... I figured they should have known ... I went for a checkup and all this stuff and told my doctor. And they do all yourfamily 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 thenI 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 haveknown before hand.One father made a point of saying that there had never been anyblame between them as a couple, "We didn't turn on each other, westuck together ... we never blamed each other, we never felt that one orthe other one was responsible, we never felt like that."58One mother admitted to feeling angry, but talked about herreluctance to express it.M: But I thought I can't get angry cause then God's going to bemad at me and it's just like, that kind of came into it and, the, thepunishment thing, like, you know. (Yeah you were saying that) Idid something wrong, this is my punishment now that my lifewill have to be looking after [baby] and blah, blah, blah, and it waslike, yeah, you did think it was going to be a burden and, and, likethen you felt guilty about those feelings. (Em, em) Like youshouldn't, it's my child. I shouldn't feel guilty or think he's aburden or anything like that. But that's okay, like, you know, it'sokay to feel like that.Although not all parents responded with anger, those that did feelanger, talked at length about their angry feelings. There seemed to be aneed to give expression to this aspect of their experience."We might lose him". Many parents described feelings of fear thatthe baby would die: "It was like, oh now we might lose him." Parentsrecounted the "negative thoughts" that they could not "kick" out oftheir minds about their baby dying, using strong words of"frightening", "terror" and "terrified". This fear elicited strongresponses, crying for many, and a physiological response for one father:F: When he mentioned that ... the baby might die, it really hithome 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. Itwas just that initial feeling, you know, that something of mine isgoing to be taken away from me. I can't explain. I've never hadthat feeling in my life before.... my stomach wanted to leave mybody. He said it was alright to feel like that but I felt, I don'tknow, ashamed, sick. It wasn't like I wanted to get sick. It was justlike my whole stomach just decided that this is time to leave the59body now and I had to leave his office. I just couldn't (Really)stand being there.Upside down world. The suspicion and its confirmationconstituted a throwing up in the air of the lives of these families: "itseemed that someone took the world and turned it upside down, youknow, all of a sudden" or "like when the apple cart is upset and youcan't handle it ... I was thrown out of whack and I couldn't handlethat." One mother felt lost and helpless and a father talked aboutfeeling "unravelled". Several parents remembered many thoughts andworries constantly going through their minds:F: Well I don't know it was just it would nicer if it weren't Iguess, 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 problemwould cause him to be in an accident because he did a lot of driving forhis work.Part of the "upside down" feeling state was related to "just a wholelot of feelings", not knowing what to do with the feelings andwondering if their feelings were normal.M: I felt a lot of guilt. (Em) That it was, cause I'm carrying himand it's my body that I've done this to him. (Em,em) I felt justterrible, I felt like the worst person on earth. (Em, em) And youget, you get scared, you don't know why and you get angry like Fsaid to you because you don't know why this is happening to yourbaby. (Em,em) And at first I was, you know, you have all thesefeelings, and you don't whether they're normal or not, if you'resupposed to have them.60"You don't know what it all means".  From the time their baby'sheart problem was suspected to the time of confirmation, parents hadan earnest desire to make sense of what happening to them, but as wellwere overwhelmed, feeling that this was going to be difficult toaccomplish. As they waited for the echocardiogram, they rememberedtheir many thoughts and feelings: "hoping that it wasn't what it wasbut..."; "cause you think oh maybe it's not so bad and then well maybeit's the worst and everyday, every minute your mind changes";"they've got to be wrong. They would have noticed that, at the fourmonth ultrasound" and:M: I kept thinking what if, what if he doesn't make it and what ifthey 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 aproblem. But there was no way, at least I didn't think maybe alittle hole or something, but they really don't tell you either waywhat the problem was. It's just left to your imagination.Not knowing what was going to happen to the baby was excruciatinglydifficult for the parents to cope with and perhaps at the root of theother expressed emotions and responses.Once the suspicion was confirmed, some felt relief while othersfelt that they had not really taken in the information they had beengiven at the time of diagnosis.F: Our minds were filled with information in three days, youknow, and when you, it's like studying for a test the night before61the test. You know, and the next morning you don't have a cluewhat's going on. Its all going around in you brain.The sense of relief that some parents felt as they heard about theirbaby's heart problem was related to being told that something could bedone for their baby.M: To hear that they knew what it was and that they could dosomething about it was really helpful. (Em, em) And the bookthat they gave us and it said right in there, you know, what he hadand what they do about it, you know. (Em, em) We thought wellgeez, they must deal with, you know know they had it written inthe book you know.F: Yeah if they've got a book on it, (Yeah) there must besomething they can do.M: So that helped a lot too.Even with this initial relief however, the parents were soon backto struggling to determine how the baby would be during the rest of thepregnancy. How would the mother be? How would the labour be andhow sick would the baby be when he or she was born? Thus their workwas laid before them as they faced the rest of the pregnancy; "I justdidn't know what was going to happen to the baby and what was goingto happen to me."Phase Two "Picking Up the Pieces": Diagnosis to Delivery"Picking up the pieces", living through the rest of the pregnancyand anticipating the birth of their baby with a heart problemconstituted the next phase of the parents' experience. Parents describedthis second phase with less intensity and detail than the other two62phases. The emotional responses of the first phase, especially those ofsadness, guilt, fear, helplessness, and depression, were present, butseemed to come and go in a "roller coaster" fashion. As well, theuncertainty that characterized the first phase was present.Distinct to this phase was the parents' task of preparingthemselves for what the baby would be like at birth. In the same waythat the fetal echocardiogram confirmed the suspicion about theirbaby's heart, parents knew that true confirmation of the antenataldiagnosis would occur at birth, when the effects of the heart defect onthe baby would become obvious. Consequently, the rest of thepregnancy, which ranged in duration from 5 to 23 weeks was spenttrying to imagine what their baby with a heart problem would be likeand trying to prepare themselves accordingly. For many, this phaseseemed to last a long time. One mother who received news of herbaby's heart problem at 34 weeks gestation said, "Oh for me it waseternity."For most parents, this phase was "okay" "until it got closer todelivery." Some parents were excited because finally they would knowwhat their baby was going to be like, a boy, a girl, sick, very sick orstillborn. For many, the pregnancy seemed like it was dragging on andthey wanted the birth to happen quickly:.M: Oh well, just you know sometimes I'm thinking oh, mygoodness, I'm want to have this baby right way. Like I can't waitanymore. Like in my eight, eight months pregnancy, alwaystelling myself.63F: You know we only just wanted to get it done and over withput it that way.M: So for me that's what it was like, just waiting. When is thisday going to be. You know, and then when we went to[perinatologist] and I think it got later and later and then theydecided that they wanted to induce because , you know he was fullterm. And I guess they figured he was big enough or whatever.For others, especially those mothers who were having their firstbaby, there was increased anxiety as the time for the baby's birthapproached, related to the delivery itself and to their fears of theunknown:M: Harder in the aspect that, you, my first baby. I didn't knowhow long it's going to take. (Yeah) And what if I deliver at homeand 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 aboutpain for me" and two mothers, who had previous children but werehaving this labour induced, were fearful of the induction; "I had neverbeen induced and I was scared about plus all this pain." Mothers alsofeared the effects of the delivery on their baby with a heart problem.Several women recounted their assumption that they would have aCesarean section because of the baby's heart problem. They worriedabout the baby's well-being despite being reassured that there was noreason that the baby could not be born naturally.M: The doctor we had said, you know, there's no reason youcan't have it natural (Okay) We want you to have it natural. It'sbetter for the baby. It's better for you ... We were scared. You64know we were thinking, oh geez, we don't want to wait. Weshould ask him to give us a cesarean, you know, because it...F: Cause we don'tM: Yeah we don't want to put him through that, what if he stopsbreathing half way down or you know whatever,F: Yeah (Yeah)M: But they just kept reassuring us (Yeah) Its better for him thatway.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 theytold us no, natural and none of us could figure that one outbecause you know you automatically think with a heart problemthat you can't go through the birth.One woman who had a previous Cesarean section was especiallyworried about the birthing process.M: Because they, and then because they want me to have anatural birth, you know, try it anyway. And, you know, I'mworried because maybe the baby have, you know a lot of stressinside, you know. They kept, they kept, letting me labour for somany hours.Parents also feared that they would not make it to the tertiaryhospital where they were to deliver.M: Well, that was what I was so worried about, and I was soscared that I was going to go into labour here and then we're goingto have to drive to [the tertiary care hospital]. Even though [thelocal] hospital is right there but I wouldn't trust them.The women also expressed fears that the physicians who knew themand their situation would not be available when they went into labour,"They told us over and over again, you know your file's here, youphone before you come in ... what would happen? But I was scared65that something is going to screw up here." One mother whose familyphysician and perinatologist may have been away when she went intolabour carried a "sheet of the condition, some information, so thatpeople would know what was going on when we went into labour".This mother had also planned to call the "heart team" when she wentinto labour, but as she asked more questions she realized that theywould not need to be called that soon. Two of the mothers met withpediatricians prior to the birth of their babies so they too would be "onboard."The Parents' ResponsesParents 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 beforethe diagnosis; preparing for the worst, but hoping and praying for thebest; 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 thatthe suspicion was raised regarding their baby's heart, these parents likemost other parents, were hoping for and anticipating a perfect baby."It's just because when you're raised, you know, in a home you expecteverything to be perfect when you have a baby." Even the mother whowas convinced that her second child would have a heart defect thoughtabout a perfect baby:66M: I had kind of dreamt that it would be nice if the child didn'thave to go through the surgery stuff and all these appointmentsagain .... I was kind of hoping that this wouldn't happen. Thatthis child would be perfect. That's what I was hoping, for thesecond one, that it would be a boy and that it would be perfect.As excited expectant parents, they imagined what their baby wouldbring to their family and they dreamt about what he or she would looklike and be like. "We were having a healthy baby girl" stated onemother who had amniocentesis earlier in the pregnancy. She and herhusband anticipated a baby as healthy and perfect as their first child:F: We anticipated because our first-born is just a model ofhealth. He's sort of what was off the scale growth. (Yeah) Fromthe beginning of time and he's just, he gonna, you know it lookslike he's going to be a natural athlete. He's perfect and he'sbeautiful ... we've been blessed with this one. Wouldn't it be, theprobabilities are we're probably going to be blessed with anotherone.After the news of their baby's heart problem, this image formationcontinued, but now the parents were trying to imagine how the heartproblem would affect their baby to come. Many parents imagined thatthe baby would die, this being their way of anticipating the worst. Onecouple wanted a boy, "ever since I can remember and so did [herhusband], 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 ohnow we might lose him."Most parents also spent considerable time wondering about whattheir baby would be like if he or she lived, thinking about "just all sortsof things". One father described his thinking about the baby as,67"Wondering, wondering whether he'll come out right away and therewill 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'dcome out blue and that they'd have to rush him away. And theysaid they'd have, you know a thing to put oxygen on him so it wasjust like a horribleF: I figured that he would beM: A horrible sight.F: Tiny when he came out.M: I guess they sort of just said we're going to have to take himaway so that was, you know that was a scary thought. You havethis 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 syndromeand they vividly described their anticipated baby:F: Like what we've been waiting for all this time and nowsomething screwed it up .... all the information we were findingout about Down's and stuff was telling us that she was carrying amonster. You know, that's the only way to explain it. Like Iactually, during the time of delivery, closed my eyes. I didn't wantto see what was coming out. (Really) I just, because I didn't knowif 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 factorinfluencing the parents' images of their baby. As well, their ownexperience, attitude and thinking helped form the images. One couplewas given a grave prognosis by the pediatric cardiologist. "They said68ten percent chance of survival," recounted the father. As well, themother was told by one of the physicians other than the cardiologist,that the baby could be stillborn. Her constant experience of the babykicking made it hard for her to believe that the baby would not live andthis positive image was reinforced by her family doctor when he wouldcheck the baby's heart rate. She described her thoughts about heranticipated baby as follows:M: You know because I knew that he has heart problem whatwould he look like when he comes out? Is he going to be likereally blue or, you know, or how is he breathing? Like because thedoctor, like every time [family doctor] checked me right and hesaid that it doesn't look like this baby even has a heart problembecause his beat is really good. You know, every time he listenhe'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 helpme I was, I was a little bit scared there too, you know. How aboutif it's going to be stillborn or you know, I always thought that evenfrom the beginning like but then I didn't. You know, I know he'sgoing to be, he's going to be strong. Because he's always movingever since I was four months from the day he was movingeveryday. So I knew, you know, there's no, there's no day that hewon't move everyday he was moving so and I'm always happy.Parents struggled to make sense of what they had learned abouttheir baby's heart problem:M: We just didn't really kind of hear. You don't know if he'll befine. (R: Yeah.) But we didn't know at the time, you don't knowwhat all that means, (R: Em, em.) Cause you obviously don't, onthe ultrasound it's just black and white and you don't, you don'tknow what means what.M: Well I didn't know what was going to happen to the baby andwhat was going to happen to me. Cause you're going through all69these tests and you don't know what he's going to be like whenhe's born. Also. like, like the doctor told us, he could die, he couldbe stillborn and stuff like this and it was like were just being fed allthese [pause]F: Negative.Parents would often recall the factual details regarding the heartproblem and then would try to figure out what this would mean forthe baby.M: ... and then explained to us like there were two holes in theheart and the valve isn't closing. And we were worried aboutwhen he was born if he would drown because with the constantflow of blood into the lungs. And like I didn't even, before he wasborn I didn't know, when he is born can you pick him up? Canyou do anything with? Now he's you can throw him in the airyou know. He does anything, like, you know, it's not a bigproblem anymore. But at first it was really scary. Like, you don'tyou 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 oranything, he's going to die, but that's not true.Some parents adjusted, or downgraded their expectations, as theyanticipated what their child would be like. One mother, who for a timewas convinced that her baby would die, recounted:M: And, it was decided at that point in my mind ... that it didn'tmatter what, it didn't matter what was wrong with her as long aswe 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 belike, they continually struggled with the fact that their images of theirbaby were just that, images. No matter how much they thought andwondered about their baby they did not know what would reallyhappen when their baby was born.70"But what's going to happen?".M: Yeah because you didn't know what was, what was going tohappen. There was just so many things that we were fed thatcould happen. This could happen, this could happen, this couldhappen. It's like, okay, but what's going to happen, like, youknow, and now it's, you know.Uncertainty for the parents continued throughout the secondphase. "What will happen to the baby?" was largely due to the lack ofconclusive information about how the baby's heart defect wouldmanifest 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, likethey have to do something right after birth or have an operation.M: They weren't sure that she was going to come out, when shecame out whether she was going to come out pink or blue andexplained what would happen if she came out blue .... wasexplained that if, in the event that, she came out blue, if she couldbe stabilized, she would go for surgery and it would be like twelvehours away from the birth before anything would happen.M: They said that the right side of her heart was slightly enlargedand that, you know, sometimes they see that in normal babies aswell and, it didn't mean that there was anything wrong but it waspossible and that it could mean a coarctation and, they couldn'treally tell until she was born.In addition, the multiple sources of medical information made thingsworse:M: It [the information] came from different doctors. It came likeevery doctor seemed to add little bit worse to the pot, you know. Itwas really, really terrible. [The perinatologist] gave us most of the71information, but then it was my doctor here who said well, youknow, you should be prepared for, he may be stillborn and allthese things. And then it was I guess [the perinatologist] said hemight need the surgery like within twenty-four hours, dependshow bad the heart is, like when he comes out and breathes on hisown. So it was like we didn't know what to expect when he came."Kick, kick, kick". Parents responded to the challenge of livingthrough the rest of the pregnancy knowing that their baby had a heartproblem by focusing on the baby. The baby's movement was reassuringand 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 himkick .... I can't believe there's something wrong with him like, youknow, and he would just [motion of baby moving] [laughter]exactly. Just forever going.One mother stated that she "never really worried". "Everyday I golike this [touches her belly], then it just kick, kick, kick, so I know he'sstrong." Her husband would remind her that "you're supporting himwhile he's inside you." She conceded that the baby might not be asstrong when he came out, but she felt his kicking every day and sowould say "well I don't know, we'll see."Focusing on the baby also involved doing things that would behelpful for the baby. For one mother, this meant trying to rest moreand "not be stressed" so that the baby could grow and develop.Another mother, with gestational diabetes, did all she could to controlher condition, "we had one problem. We didn't need another is what Ikept thinking." Another mother believed that her working hard72would make the baby work hard; "like when I know the baby have aheart problem, that's when I, I think of work like I work so hard so thathe gets more stronger." Much to her friends' dismay, this woman tookon a strawberry picking job so as to work hard on the baby's behalf.When her baby survived the 90% odds against him, this motherwondered if she had succeeded in making him stronger."Scared to grow too attached".  Unlike mothers who wereconstantly reminded of the baby by the movement and kicking, fathersdid not have this ongoing reassurance to help them through thedifficult time following the antenatal diagnosis. One father, who hadbeen ecstatic when he found out that he and his wife were expectingtheir 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 togive 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 mystomach.F: With him [points to older child]M: With him every minute, he touch him, and that's why I wasso mad at him you know. I say who cares if the baby doesn't makeit, you know, at least you feel the baby's moving inside me. SoI'm always mad at him.F: I was very scared to get, you know, really attached.Continuing with baby preparations was also difficult and someparents put things "on hold". "We actually stopped buying things forthe baby" said one father, "we never even thought about the baby'sroom." His wife cancelled a baby shower saying, "I didn't want that."73Some parents just did not want to talk about the baby and what wasgoing 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 theparents' described efforts of not getting too attached or involved withthe anticipated baby were their accounts of how they preparedthemselves for the worst.M: Right, and that was the other thing, on that point I had toldpeople, both doctors, obstetrician, my family doctor, I had beenpreparing myself for the worst, while I was going through thisbefore her birth. They were encouraging me on that point, sayingthat's probably best. And the worst to me was the fact that shewould come out blue and she, if she could be stabilized she wouldbe prepared for surgery at that time, So, and that was how I wasgoing, preparing myself for the worst.One father summarized his rationale for this response:F: We prepared ourselves for the worst case scenario...Wefigured that would be more positive because like I said to M, I gowe're ready for the worst and anything better is going to be goodnews. If you're expecting really good news and you set yourself upfor 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 justboth of us agreed to like I say.Preparing for the worst took the form of preparing for thepossibility of the baby dying. One couple talked about quality of liferelated decisions, holding the baby after death, and organ donation:F: I didn't want it to sneak up on us, like when the baby wasdelivered and not have, seeing those organ transplants we justthought well if the worst comes to the worst and he can't make it,we'll donate his organs.74One mother wondered if she should be making funeralarrangements before the baby was born. Her husband followed hercomment with:F: I actually hung onto the moment he was born and thedoctors were wrong. I was actually, I actually believed that thedoctors were wrong. You know, although they had the facilities toprove me wrong, I actually held on to that belief that they could bewrong .... I don't know I just thought they could be wrong.These contrasting responses reflected the experience of manycouples 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 everytime.F: When you're in a situation like that it's darn hard though toalways think positive, you know, kick those negatives.M: He kept saying, you, think, positive, think positive, just sortof the positive thinking.F: You're always getting negative thoughts in your head.F: Keep a positive attitude towards it.M: YeahF: Hope for the bestM: Every time I tried to say what if, he'd say, you know, don'tthink that way, and then it was sort of conversation was ended.One mother's positive hopes for her baby were met with herhusband'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 told75him." This same mother stated that she believed in miracles. She wasnot the only parent that prayed and hoped that their baby would beokay."Praying that he'll be okay". Many parents prayed and hoped for amiracle. One mother prayed, "Oh please, could we just even bring himhome." "Just pray, that's all I do" was one father's comment. Anothermom said, "every night I was crying and praying that he'll be okay andyou know, the heart it will develop and maybe the doctors, you knowthinking of the doctor must be mistaken. One mother remembered theperinatologist telling she and her husband, "if you guys believe inmiracles, believe it and I said I believe in miracles myself". After herbaby was born she remembered a doctor saying "so it looks like yourbaby's going to make it." She recounted her response as, "So I saidthank God, I said, I've been praying for that from the beginning I toldhim."For one couple, the grandparents were the ones hoping for amiracle.F: All the parents, I remember my Dad and my Mom they kepton thinking oh no, no, you know, just hope and you watch they'llbe nothing, you know, remember they were convinced thatM: Yeah they thought that all, the second childF: There's a miracle here. Hopeful that something wouldchange."Asking a million, zillion questions". Parents also responded byseeking information. Many parents did not "take in" the informationprovided at the time of the fetal echocardiogram and so many of their76questions did not come to mind until after the appointment. Thesequestions were raised in follow-up appointments with their familydoctors and obstetricians. For the mother whose baby had CHD as wellas Down's, her information seeking was more related to the Down'ssyndrome, "so I did a lot of running around and I, I didn't really asktoo much about, about his heart cause it was mostly the Down's I wasworried about."One couple said they were relieved to have the suspicionconfirmed and were glad to receive information about what could bedone for their baby's heart problem, but at the same time remainedguarded in their optimism.F: I mean it was, I mean we still didn't have high expectationsof him doing well, actually we were thinking.M: We thought the worst."We broke it to everybody". All parents told their family andfriends about their baby's heart problem. Most responded in asupportive manner, with assurances, understanding and practicalsupport. Benefits and drawbacks of pre-existing family situations weremagnified during this period. One mother, who had recently movedaway from the city where her parents and sisters lived, talked at lengthabout how much she missed her family. Since her move away she hadwanted to move back and now she longed even more to be closer toher family. One mother's father died prior to the news of the antenataldiagnosis and she cried as she related how much she missed him, "Henever got to see her. He knew we were having a girl."77Family members perceived as non-supportive were described interms of the circumstances that contributed to this: "Oh my family, wecan never count on my family at all", "because my Mum is goingthrough a lot right now with my step dad, you know" and "her mom'sgot problems right now too so."Putting things into perspective. Parents tried to make sense ofwhat they were experiencing. They described how their view of lifeinfluenced their experience. The woman who was praying for amiracle said that "where I came from we believe in a lot of miraclesright ... it's part of the religion."One father stated that "if it was meant to happen that's whatwould happen anyway." Another parent's view was, "It's in God'shand, what will be, will be." The philosophy that another father livedby was as follows:F: There's no guarantees, I mean how do you know. I think nomatter what somebody says, until you have it, until you haveyour child, it seems to be that, that they can't, there is no crystalball of course, they can't say that, that if you have a child that therewill be no problems because of the, the odds are just have to, ifyou 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 aproblem, it's, there's nothing we can do and it's just like a trial ora test for us, and we can handle these things.Several parents' view of life was summarized by this father'saccount of "comparative analysis":78F: So ultimately I firmly believe in a comparative analysis ofyour problems (Em,em) You know your people are down, we allget down in the dumps and get the blues, but I always say don't beso self well not self-centered but only use yourself, look at otherpeople and their problems and then yours become at leastmanageable. (Em, em) And we really have no problemscompared to others.Another parent found beliefs related to everyone havingproblems in life helpful.M: See the way I think about our life is like everybody hasproblems. (Em, em) And you know you've got all sorts ofdiseases, all sorts of things, health problems, everybody's got to tryto cope with what they have and they say that's life ... And I justfound well, you know, our problem is you know we have noproblem, otherwise so it's just the kids they have the heart defectand that's our, you know, some people have other problems.One father's summary comment reflected what many of the parentsintimated about their expressed beliefs and values, "And that's the waywe're raised so I think that makes a difference."Phase Three "He Cried": Birth to ReliefPhase three began at the onset of labor. Five of the eight womenin the study had labour induced. This phase ended with the birth ofthe baby and the parents' discovery of how the baby they hadanticipated compared with their real baby. Parents experienced labourin one of two ways. They were either completely aware of the baby ornot at all aware of the baby. Parents vividly recounted their initialresponses to the baby. These descriptions were told in almost the same79intense and detailed manner with which they had described theirexperiences in phase one of the echocardiogram itself and theirreaction to the news of the heart defect initially. Their vividrecollections of seeing their baby for the first time were verified inmany of the second interviews where parents recounted word for wordtheir responses despite several months between interviews. For mostparents, sight of their baby after birth brought much relief; things werebetter than they had expected.The Labour"I thought about the baby".  For some mothers, the onset oflabour escalated their fears regarding their baby's well-being. Thewoman who was admitted from her clinic visit related her feelings ofpanic when her waters broke several hours later. She recounted herexperience in a loud and anxious voice.M: Yeah the water flows and then I'm like, you have to dosomething now, my baby got a problem, you have to dosomething [shouting]. You know I'm really scared, I'm veryscared (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 duringher labour and how she felt that she was the only one worrying aboutthings:M: But you know like the nurse says oh you're only seven,seven centimeters or something, you know, like they're not reallythat worried. (Yeah) So I'm screaming that you know call thedoctor and there's something wrong with my baby and they haveto do something right away. So, so they run and well I'm just80scared you know, like I'm so scared, and like I might deliver inthat room [on the ward], you know, and it was just, and thedoctors doesn't know what to do and the nurses doesn't knowwhat to do with my baby. So I was scared.This woman's baby was born within one hour of her waters breakingand despite the intensity of such a quick delivery, she talked about howaware of her baby she was: "my baby's alive" and "I didn't want himdead cause he's kicking" and "I want him to live you know." Shecould think only about getting the baby out so that he could receive thecare that he needed. She recounted this aspect of her experienceseveral times during the interview.M: Okay one thing I , I, well it's really painful you know, all youhave, 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 pushhard and let the doctors see him and you know and look what'sthe problem.M: Yeah, you know, what I'm thinking is just to push rightaway, like, you know, to help to, help him right away because, youknow, I know there's something wrong but I really tried, that'swhy I have a quick labour because, you know, I did, you know, allI can do to help him right away.M: You know delivery so I says my goodness you know I have tobe 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 ofher baby being stillborn -- "like I always think that he might be stillbornwhen I have him because, you know, the doctor kept saying that", wasaware of the baby's kicking while she was in labour; "when I was laying81on there like, in labour the baby just kick, kick, kick, so I knew that, youknow, he's strong."One mother said that she was especially aware of her baby duringher time of pushing.M: I remember when I was ready to have him ... when you getcontractions I was trying not to get too dramatic duringcontractions like [gasping to demonstrate effort] the pain, like justkeep calm, and then when that, when it was time for him to beborn, I know with [daughter] and [other daughter], when you haveto push I just screamed blue murder and with [this baby] I didn't. Itried not to scream so it wouldn't be as big as shock as it wasalready 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 bescreaming and he's got heart problems and scare him like, youknow. (Really, isn't that interesting.) And like, you know, justtrying to keep as calm as possible, just to have him and it's workedit 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 thatshe did not do anything differently during this labour because of herknowledge of the heart defect.M: No, nothing at all, just trying to get this baby out as fast aspossible (Yeah) Get it over with and I was happy, excited... It'sexciting again because you're trying to figure out if it's a boy orgirl.One mother wanted everyone to know about the baby's heartproblem and her own diabetes. This mother, who had probably donethe most preplanning for labour and delivery, was amazed at herinability to provide necessary information to health care professionalswhen she arrived at the hospital to have her baby. She had anticipated82being able to advocate for herself and her baby once she got to thehospital:M: I thought I had lots of time to phone, to just say, okay, this ismy 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 thesituation, here's the paper, here's you know. (Em, em) You knowbe 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 "aggressivelabour" when she arrived at the hospital and although she was awarethat she needed to communicate information about her diabeticcondition and her baby's heart defect to her caregivers, she was not ableto do so:M: They didn't know I was diabetic. I didn't, I was in a low riskroom, cause I was in high risk before, I know the room .... so Iremember, oh, her asking me who my doctor was and I wasconcentrating and I was in labour and I thought man, I've lived inthis place, you guys don't know who my doctor is.This woman was not "in the mood" to answer questions andalthough she was going to "be so prepared ... it just was nothappening." In the end, "it all came together, everyone was reallycool." Concerns regarding being known and recognized for the risksthey represented were greatest for the women who were not induced,but who arrived at the hospital in labour. Women who were inducedexpressed relief that they no longer had to worry if the right peoplewould be present at the birth. Induction meant that things would not83be left to chance. Knowing that the right people would be there wascomforting for parents."I didn't think about the baby once". In contrast to the womenwho thought about their baby during labour, several women expressedsurprise at not thinking about the baby during this time. Thesewomen, in anticipation of labour and delivery were anxious aboutwhether the people who knew about their baby's heart problem wouldbe "on alert". As they reflected on their experience, they seemedpuzzled 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 doctorthat 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'rehaving a baby, you know. (Yeah) You've got to also rememberthat. ( Yeah) I think while I was delivering I just sort of puteverything out of my mind. (It's almost like at that point it'sbirthing the baby that is what) That's all I worried about, yeah,exactly.Another mother talked at length about how she did not thinkabout the baby and her surprise grew as she continued talking:M: I never once thought how the baby was doing. Not once, Iwas so, I guess so into the labour and just like, you know, trying toget the baby out. I never thought at that time that there's aproblem. I guess because I knew they were monitoring the heart.M: Yeah cause it was somebody, I think someone asked me. Youknow well God, weren't you worried about how [the baby] wasdoing while you were in delivery. And I said you know I nevereven thought about it. I think cause I knew F was right there.F: I was watching the monitor the whole time.84M: Now that I come to think of it like I don't know why I neverasked about getting the epidural and things like that. What wouldthat do to the baby? It never bothered me at the time, but I thinknow 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 onlooking over at the monitor just to see how his heart was doing andhis heart was doing great, it seemed like."F: I think I focused on the monitor that they have, like thebaby's heart beat and that and they tell you what their rate issupposed to be and I watched it pretty well the whole time andyou know.As labour progressed, one father was less focused on how the babywas doing; "Well I think when he was delivered, oh I hopeeverything's going to work out and then, I don't know, I fell right intoit, let's get this baby out, you know."The BirthThe birth of the baby was when the parents realized what theiranticipated baby really was like. The two couples with children withheart problems experienced outcomes that were worse than they hadexpected. One baby had an additional congenital anomaly that had notbeen anticipated and required immediate medical attention; the otherbaby had to have heart surgery within hours of his birth. Theirprevious child had not required surgery until she was older and theyhad assumed the same would hold true for their expected baby.For the rest of the couples, the birth of their baby was when theyfound out that their "worst case scenarios" had not materialized. Their85bright exclamations of "He cried" reflected their delight that theirbabies were better than expected. Despite the fact that several of thesebabies required immediate attention and transfer to an intensive caresetting in the adjacent pediatric hospital, the parents were nonethelesspleased with how well their baby seemed as compared to what they hadanticipated."He cried". Having prepared themselves for the worst mostparents were surprised that their baby cried at birth. Many assumedthat the baby would not cry and so had vivid recollections of that firstcry.M: Then he, and then I, and then it made me happy. That'swhen he came out and he cried. (Okay) That made me happy likebecause I knew that, you know, that he's not dead or anything.F: When he was born, when he cried that's what you knowbrought a little relief. That brought a little relief ... like I meanwe'd thought about it, you know, like what we wondered, will hecry like a normal kid? And we always thought ... like that hewouldn'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 signcause at least he's got a voice now.M: Yeah.F: If he wasn't crying I think I would have been a lot moreworried.One mother was so surprised to hear her baby cry that for amoment, she was sure the doctors had been mistaken about the heartproblem; "they must be mistaken or something, you know, like cause ifhe cried, he's okay."86The mother of one of the babies recounted in a surprised tone,"Yeah I remember, yeah, he cried [surprised sound in voice]. Iremember he cried." As this couple remembered the time of deliverythe woman asked her husband, "did you notice if he was blue, I neverasked". He answered that he did not notice because it was quite darkand then right away again the mom said, "Oh yes, yeah, I just know Ihear him crying."Another couple recalled their baby's cry, his colour and how theyfelt 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 lookssuper, you know.M: And I got, you know, got to have him for a good fiveminutes.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 rightaway.)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'sgoing to do fine, he was, you know, he was pink, he wasn't blueand 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 theirbaby, even if for only a brief time, was reassuring for the parents, "andso when they did that [gave her the baby] I thought well, he must besuper you know. It was a relief." One father was asked if he wanted totake a picture of the baby as soon as he was born.87F: It caught me off guard cause I thought it was going to be sortof like scoop and run sort of thing.M: Yeah.F: And no so I started fooling around with that thing there. Ididn't have my lens cover off my camera [laughter]. They'regoing, "Take your lens cover off." I was all excited. (I guess so) Ididn't expect this. (That's right) So I had the camera, but I wasn'treally 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'twant to see what was coming out." The birth of their son immediatelydismissed their fearful expectations; "then when it was all over Ithought well, it's no big deal. He's healthy, you know, he got tenfingers, ten toes .... He was quite perfect." His wife remembered thatshe "just fell right in love with him." "He's not what we expected, youknow," she stated and:M: He was born and it was like, you looked him and there'snothing wrong with him, like he, you know, he was fine on theapgar remember the doctor .... one of the guys who takes the babyafterwards I guess, one of the nurses he was putting oxygen ontohim and the doctor come over and said, does this baby needoxygen and he kind of looked at him and the doctor said does thisbaby need oxygen, he said well, no, he says well then why are yougiving him oxygen?Although their expectations regarding the Down's syndrome wereadded to this couple's task of preparing for the birth of their baby andthus their responses at his birth, they, like many of the other couples,were amazed at how responsive their baby was at birth: "He's88screaming. If he's that sickly why is he sitting here screaming his headoff, you know. Why is he kicking and have you know, just being like anormal baby like [older daughter] was."Despite "feeling good" about their baby's vigorous condition, thiscouple 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 womanwondered about the information that she had received and itsinfluence on her expectations regarding her baby.M: Because like he [perinatologist] said too, he didn't know. Seethey just go by, statistics I guess, like just, what they're supposed tobe like and this, this, this. (Em, em) But they might not actuallybe like that so maybe if [the baby] was worse I'd have to be allpsyched 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 sobad and feel good which I did.Another couple who had been prepared for the possibility of theirbaby requiring immediate cardiac assessment and emergency surgery,knew as soon as their baby was born that she going to be okay. Themother recalled, "So out, well, I mean all I know is the baby came outand I got her right away and she was wonderful." She rememberedthat her apgar score was nine and said:M: You can't get any better than that. I don't think they givetens [Laughter] so then I knew we were sailing from there and itwas wonderful, just terrific so they did take her away and I got tohave her for an hour.89The father was as convinced as his wife of his baby's goodcondition, remembering that "the baby came out nice and pink, shewanted 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 wasfinally revealed. "He's not a creature, he's a little baby" was the mostdramatic expression of the meaning revealed, and although thiscomment came from the father whose baby also had Down's syndromediagnosed antenatally, his response vividly illustrated the revelationsthat each parent experienced at the birth of their baby."Scoop and run". Several couples recounted that their babies weretaken from the delivery room within a short time of birth. They hadlittle recollection of what their baby looked like. One mother could notrecall having seen her baby, but remembered thinking, "He can't makeit." Another woman remembered that "he was a little bit blue" and "Ihardly even see his face. The only time I see him, his foot was turningblue though." She remembered that she was allowed a quick glance atthe baby, but that she was "too tired." Her husband took pictures of thebaby "right then and there, bang" and "got to see him for a couple ofseconds 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 betterthan they had expected because he was born alive. Even though theirbaby had to be whisked off to the pediatric hospital, they were relieved90that they had heard their baby cry, this being more than they hadanticipated.Analysis of Central Concepts The experience of parents who know about their baby's heartproblem antenatally has not been described in the literature. Thecentral concepts identified in this study are uncertainty, grief andmaternal tasks of pregnancy An analysis of these concepts enhancesour understanding of the findings.UncertaintyThe principle work related to the concept of uncertainty has beendone by Mishel and is grounded in her experience with hospitalizedadults. Uncertainty is defined as "the inability to determine themeaning of illness-related events .... the cognitive state created whenthe person cannot adequately structure or categorize an event becauseof the lack of sufficient cues" (Mishel, 1988, p. 225).In this study most parents were unable to determine the meaningof their baby's heart defect and therefore, experienced uncertainty.Mishel (1988) describes three components that contribute touncertainty: symptom pattern, event congruence, and eventfamiliarity. In this study, parents' inability to make sense of theirsituation can partially be explained by a symptom pattern not beingpresent. The only indication that their baby had a heart problem waswhat the cardiologist told them about the fetal echocardiogram91findings. There was no visible pattern of symptoms to help the parentsdetermine what the heart problem meant for their baby. Additionally,event incongruity was present as they focused on their baby who waskicking and moving. What they were told to expect about a baby with aheart problem was not congruent with their experiencing a lively,growing baby within. This prevented parents from making sense ofwhat 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 ofothers who had such an experience. They could not rely on theirprevious experience or knowledge as they tried to make sense of whatthey were experiencing. For parents who had previous children withCHD, the outcome of the event, a child with a heart problem, wasfamiliar for them. This helped decrease some uncertainty because theyassumed that the baby would be similar to their other children withCHD.Having a sister whose baby died of a heart problem made onemother's antenatal diagnosis of CHD feel painfully familiar anddecreased her uncertainty. This instance, however illustrated thatuncertainty is not inherently a dreaded or desired state until theimplications of the uncertainty are determined. The implications ofdecreased uncertainty for this couple initially were that they were surethat their baby would die and that they could begin to grieve theanticipated loss of their baby. As time progressed and they gained92familiarity with their own baby's antenatal diagnosis and learned thatthere were treatment options available, their uncertainty againdecreased, the implication this time, being that they were more surethat their baby would live.Mishel (1988) describes several variables that influence thecomponents contributing to uncertainty: cognitive capacity, education,social support and credible authority. Cognitive capacity refers to theinformation-processing abilities of the person. Immediately followingthe echocardiogram when the parents received information regardingthe diagnosed heart problem, the stress of the situation restricted theparents' ability to take in and remember what they were told and thus,use the information to make sense of their baby's problem. Onemother was not able to put into words her recollection of the timeimmediately after the echocardiogram. Her response was, "I don'tknow. I was a mess." Uncertainty, therefore characterized the firstphase of their experience from suspicion to diagnosis. As the news oftheir baby's heart problem began to "sink in" during the second phaseof their experience, parents' cognitive capacity was less limited andthey were able to process information they received and theiruncertainty decreased.Another influencing variable, social support, "acts to preventuncertainty in various life crises by supplying feedback on the meaningof events" (Mishel, 1988, p. 228). Many parents described the role ofsupport. One woman found it helpful to talk regularly with her sister93who worked for a physician; "she had some medical connections ... andshe can help, you know, like if I'm really down at the time so maybeshe might help me." Another father talked about his mother, an "exnurse":F: ... and she says it's amazing what they can do. She worked ina children's hospital in [name of city] (Really) So, I know sheworked with a lot of sick kids and she said you know they're reallygood these days.M: YeahF: 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 theycould do something about it was really helpful.Two parents indicated that helpful sources of support andreassurance were parents of children with heart problems or otherhealth problems."Credible authority" is an additional variable identified by Mishel(1988) that influences uncertainty. She argues that if a person trusts thehealth care provider because of the care received or because of theprovider's position of power, there is likely to be less uncertaintyregarding the illness-event in question. Although there was evidencein this study that the parents trusted the physicians involved in theantenatal diagnosis and ongoing care, unlike in Mishel's work, theiruncertainty was not decreased because the anticipated outcome of thebaby's heart problem was not known by any of the credible authorities.If anything, each physician provided his or her own anticipatedoutcome and the differences in opinion contributed to the parents'94uncertainty. Closely related to this aspect of their experience was theways in which parents sought information.Information seeking is a coping strategy used to reduceuncertainty (Mishel, 1988). As parents' sought information about theirbaby's heart defect in the antenatal period, they better understood theproblem that they were facing and were more able to make sense oftheir experience. Access to information about the baby's heart defectdepended on where the parents lived and who they saw for follow-upantenatal care. Those in outlying areas saw their family physician forfollow-up, while those in the city of diagnosis were usually seen by theperinatologist at the tertiary hospital where the antenatal diagnosis wasmade. Some were told by their family doctor or perinatologist thattheir baby could be stillborn. This information, as provided by acredible authority, in fact had the potential to decrease uncertainty inthat they would be certain that the baby would die. Discussion ofuncertainty appraisal is necessary to further understand parentresponses.Appraisal of UncertaintyMishel (1988) argues that because the experience of uncertainty isneutral, neither a desired or dreaded state, an appraisal of an uncertainsituation is necessary. In this research appraisal was an ongoingprocess throughout the first two phases of the parents experience ofknowing about their baby's CHD antenatally. Appraisal results inparents deciding if the uncertainty of the situation is good or bad, "a95danger" or an "opportunity." When the perceived outcomes associatedwith decreased uncertainty are worse than the perceived outcomesassociated with remaining in an uncertain state, the person mayattempt to preserve the uncertainty that he or she is experiencing. Insuch an instance Mishel would tell us that the uncertainty is appraisedas an opportunity. This process was evident in parents who remainedoptimistic about the baby's outcome, even when they were told thattheir baby could be stillborn by a credible authority. Their source ofoptimism stemmed from their choice not to take in what the doctorwas telling them by, for example, not discussing the possibility of astillbirth and/or firmly believing that a miracle could occur. Theparents remained uncertain because the certainty of their baby beingstillborn would not allow them to hope.In situations where parents appraised that a full understanding oftheir child's heart defect would result in them being in a better statethan their current uncertain state, the parents sought informationregarding the heart defect. Many discovered that there were treatmentoptions for their baby and that there were children with heart problemsalive and enjoying life and therefore, they could be hopeful about theirbaby's outcome.As uncertainty is a central explanatory concept to parents'experience it enables us to understand the parents' experiences whichare not isolated occurrences unique to them alone. The parents'experiences reflect the experiences of others who have come to terms96with the meaning of an illness event in their lives. The dilemma facedby parents receiving an antenatal diagnosis, is that they are giveninformation about their baby's heart problem, but are not able to act onthe information until the baby is born. Therefore, parents embark on atime of waiting, wondering and trying to make sense of what they havelearned about their unborn baby and what it is that they are to expectwhen their baby is born.While the concept of uncertainty and the ongoing appraisalthroughout the phases of the parents' experience of antenatal diagnosisof CHD has been discussed in terms of Mishel, further understandingof the parents' experience is gained through comparing Matthews'(1990) work with this study. Although Matthews' study includedmothers only and this study included parents whose children werewell at six weeks, similar findings between the two studies included theparents' feeling that the waiting for verification of the suspectedanomaly was too long, whatever the time frame was, as was the waitfor the baby's birth. The mothers in Matthews' study and the mothersand fathers in this study also all asked "Why me?" and "What did I doto make this happen?"The other major similarity between the two studies is thedescription of the experience in terms of several phases. Matthews(1990) uses "Uncertainty" to describe the first phase of her Expectancy ofLoss model. The implication that uncertainty characterizes one phaseof the experience only, does not concur with the findings of this study,97in that most parents who found out about their baby's heart problemantenatally experienced uncertainty until their baby was born. Thisdiscrepancy in findings could be accounted for in that all babies inMatthews' study died. It is likely, although not stated, that the womenwere informed of their baby's inevitable death and so were able todetermine the meaning of their baby's antenatally diagnosed problem.The anticipated certain death of their baby may have accounted foruncertainty not being a part of their experience following suspicionverification. This is similar to one couple in this study who for a timewere certain that their baby would die. This couple, however,experienced uncertainty as the pregnancy progressed becauseinformation gained included the possibility of other outcomes, as didtheir own positive thinking about the baby's possible outcome at birth.This ongoing appraisal and reappraisal of uncertainty wasreflected in parents preparing themselves for the worst while at thesame time hoping for the best. Although Matthews (1990) does notdescribe the subsequent phases of the mothers' experience in her studyin terms of uncertainty, she found that the time from the antenataldiagnosis to the birth of the baby was "overwhelmingly characterized asa hope/no hope cycle". Presentation of Matthews' "hope/no hope"concept to parents in this study's follow-up interviews elicitedimmediate responses of recognition and understanding. Theirexperience was captured by this phrase and is perhaps equivalent to theongoing appraisal and reappraisal of uncertainty that occurred because98the outcome of the antenatal diagnosis could not be determined untilthe baby was born.The anticipated outcome was a key influence on the parents'experience of antenatal diagnosis. The mothers in Matthews' studyseemed more sure that their babies would die than did the parents inthis study. Their responses of wanting the doctors to "fix it" or '"get ridof it" (p. 171) were not part of the parents' experience who found outabout their baby's heart problem antenatally. One woman, when shefound out about her baby's heart problem, did feel guilty that she hadnot had the amniocentesis that had been offered her earlier in herpregnancy:M: And I didn't take that so the first thing I felt is I'm guiltycause I should have the test, maybe they will, you know, early,they will find it earlier and, you know, like I have to decidewhether I'll terminate it or...Although the amniocentesis would not have revealed her baby's heartproblem, this expression of regret may have reflected her desire thatthe defect would have been diagnosed earlier in the pregnancy whentermination would have been an option.Two couples were offered the option of termination when theirbaby's heart defect was diagnosed. One couple referred to this option as"extermination". "They didn't want to say abortion" was the mother'scomment. Her husband went on to say, "They don't use that [the termabortion] anymore, but I don't care. We couldn't live with it, youknow, like we could never do that."99One mother with a previous child with CHD was diagnosed at 17weeks and recounted the termination option, "They asked me toabort." Her husband was quick to correct her, "No, they offered [saidwith emphasis] that to you". This couple anticipated the outcome fortheir baby would be similar to their previous child with CHD and sotermination was not considered.The final difference between the two studies, again related to theanticipated outcome of the baby at birth, was the parents' response tothe baby's condition at birth. In this study most parents were relievedwhen they saw their baby at birth. For the mothers in Matthews' (1990)study, the baby's birth reconfirmed the lethal nature of their baby'sanomaly. Their experience was not relief, but rather "the revalidation,the living reality of the severe nature of the infant's abnormality andthe eradication of the 'hoped for miracle' (p. 172). The outcome thatthey had been certain about was realized.GriefThe first two phases of the parents' experience was alsocharacterized by grief responses. As there is no literature describing theparents' experience of finding out about their baby's heart problem orother congenital malformation antenatally, verification of this findingwas sought in the literature pertaining to the experience of parentswho find out that their newborn has a congenital anomaly.Many have conceptualized the parental responses to the birth of achild with a congenital anomaly in terms of loss and grief (Bristor,1001984; Goodman, 1964; Kennedy, 1970; Solnit and Stark, 1961). Fortierand Wanlass' (1984) five-stage model of a family crisis is a synthesis ofmuch of this literature and provides a useful framework with which tocompare the findings of this study. Despite the fact that the diagnosisof the problem occurred antenatally versus postnatally, manyresponses to the antenatal diagnosis mirror parent responses reportedin the literature when the diagnosis was made after the baby was born.Parental responses during the suspicion to diagnosis phase of theirexperience, corresponded closely to Fortier and Wanlass' (1984) firststage of family crisis of "Impact". Although the words are slightlydifferent, the "numbness, shock, anxiety and disorganization" thatFortier and Wanlass describe are corroborated by the this study'sfindings 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 notcongruent with what the parents experienced in this study, or moreaccurately perhaps, was not the way in which the experience wasconceptualized by the investigator. Responses of "disbelief" and "nothearing" as described by Fortier and Wanlass (1984) were evident as theparents in this study described their experience. Such responses,however, were not presented as denial, but as the inevitable responseto the devastating news of their baby's heart problem. The disbeliefwas more related to the shock that they described and the not hearingwas related to "being fed so much information" at such a stressful time.101Fortier and Wanlass' "shopping for cures", "imaginary explanations",and "distorted expectation" were also not corroborated by the parents inthis study. These terms seem to reflect the explanatory model of theprofessional. Parents hoped that by thinking positively, praying everynight and believing in miracles they could make the heart defect wouldgo 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 ofparents who had a baby born with a congenital anomaly. As well, theother emotional responses of shock, anger, fear, guilt and depressionthat she found were similar to the experiences of the parents in thisstudy.In the third stage of Fortier and Wanlass' (1984) model, referred toas "Grief", ten responses are identified, and many are consistent withthe responses of parents who knew of their baby's heart problemantenatally. Fortier and Wanlass' response of "sense of beingdifferent" was not a response found in this study except perhaps in thefather of the baby who was diagnosed with Down's syndrome as well asCHD who expressed his fears regarding his child being treateddifferently in the future. One mother found that her friends did notknow how to respond to she and her husband at first; "people gotscared to talk to you, like one of F's cousins. She wanted to phone meso bad, but she was scared to." If in fact this reflects the "sense of beingdifferent" that Fortier and Wanlass describe, it did persist. This couple102talked openly about their baby's heart problem, and found their friendsbecame more comfortable with them.It would seem therefore, that even though parents who found outabout their baby's heart problem antenatally, had not yet seen theirbaby, their responses were similar to the grief responses of parents whofind out about their baby's congenital anomaly after the baby is born.The major difference, however between the parents whose baby'scongenital anomaly is diagnosed at birth and those whose baby'sproblem is diagnosed antenatally is the time period that must transpirebefore the implications of the baby's diagnosis can be known. Livingthrough the rest of the pregnancy is a key aspect of the parents'experience.Maternal Tasks of PregnancyAgain, because parents' experience of antenatal diagnosis has notbeen described elsewhere, the author examined the findings in relationto the perinatal literature.The parents' efforts to imagine what their baby would be like atbirth, their desire to know what the heart defect would mean for theiranticipated baby and their worries and concerns related to the birthingof the baby will be discussed in relation to Rubin's maternal tasks ofpregnancy (1984). Rubin's grounded theory is based on her study ofpregnant women and so the responses of fathers who found out abouttheir baby's CHD antenatally cannot be accounted for by her work.103Reva Rubin (1984) describes the "work" of pregnancy as fourinterdependent tasks:(1) seeking safe passage for herself and her child throughpregnancy,(2) ensuring the acceptance of the child she bears by significantothers,(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'swhen the high risk, high technology aspects of pregnancy andchildbirth were not the reality they are today. Despite the advances inthis area of health care, as exemplified by antenatal diagnosis of CHD,mothers' responses during the rest of their pregnancy verified thatRubin's maternal tasks still apply. Stainton, McNeil, and Harvey(1992), however, suggest that the tasks are altered in a high riskpregnancy or with a high risk newborn. The findings from theirphenomenological study of women in high risk perinatal situationsbuilds on Rubin's work. The resulting maternal tasks of uncertainmotherhood 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 bestressed, working hard so that the baby's heart would work hard, andworrying about labour and birth were ways in which women soughtsafe passage for themselves and their babies with CHD. Stainton et al(1992) found that this first task of safe passage dominated thepregnancy. This finding is corroborated by women who knew about104their baby's heart defect antenatally in vivid their descriptions of theirconcerns regarding their baby and all they did to ensure his or her well-being. Two of the three women who were employed outside of thehome at the time of the antenatal diagnosis, took time off work andeventually quit altogether so as to decrease their stress and focus onwhat was happening with regard to their baby. Seeking the services ofan perinatologist and in two instances, a pediatrician, also showedconcern for their baby's safety, as well as their own. The mothers'statements related to their thinking about how their baby would beduring the labour and birth also reflected the all-consuming nature ofthis task during the rest of their pregnancy.Gaining acceptance by OTHERS. The second task, ensuring theacceptance of the baby by others, was evident in all women telling theirfriends and family about their baby's heart problem. One mother told"anyone who would listen." She wanted their opinions and anyinformation that might help her make sense of what was happening toher. The husband's acceptance of the baby was important to thewomen and some described concerns about not being able to talk aboutthe baby with their husbands, "it was too scary". One father tried toreassure his wife that it was not that he did not care about what washappening; he just did not know what to say or do, "But what can Ido?" One mother's description of being "mad" at her husband becausehe would not feel their baby's movements is better understood in lightof this task of seeking acceptance of the baby.105Stainton et al (1992) also found that the role of "others" in thehigh risk pregnancy was intensified, in that mothers were moredependent on those around them, and was extended, in that moreprofessionals became involved. Many mothers recounted how theyrelied on their family and friends for support and all experiencedincreased involvement with health care professionals following theantenatal diagnosis of their baby's CHD. One woman's "informationsheet" for presentation at her time of delivery in case "her" doctorswere not available, exemplified the women's efforts to ensureacceptance of their baby.Binding-in to the child. The task of binding-in to her unknownchild was well underway by the time parents in this study found outabout their baby's heart problem. Mothers recalled their expectationsregarding their baby before they found out about the heart problem.Their intense responses to the news of the baby's heart problemdemonstrated the maternal child relationship present. Stainton et al's(1992) findings indicated that the binding-in task was challenged by themother's self-protection efforts as the well-being of her baby wasthreatened. The women's struggle with preparing for the worst andhoping for the best reflected the challenging task of binding-in to theinfant. Mothers focused on their baby's movements and could nothelp 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 the106"what ifs", they tried to imagine what their baby would be like at birthconsidering the heart problem.Many mothers surmised what it would have been like if theywould not have known about their baby's heart problem antenatally."I wouldn't you know, wish that on my worst enemy" was onewoman's conclusion. "It would have been horrible .... we would havebeen devastated." Mothers' knowing ahead gave them an opportunityto prepare for the birth and all that was in store for them related to thebaby's heart problem. One mother stated, "we had enough to dealwith, you know, with the surgery [that occurred right after the baby'sbirth]. I'm glad we knew ahead." The relationship between theimagined baby and the real baby at birth with regard to congenitalanomalies is articulated clearly by Waechter (1977).The development of an image of the hoped-for child is animportant process in the preparation for motherhood; in turn,the image allows for the beginning of the bonding process andprovides the foundation for later secure attachment betweenpartners. When the infant is born with a defect the discrepancybetween the fantasy and the reality precipitates a tremendoussense of loss -- loss of a desired goal, of the visualized expectedperfect child, of important elements of self-esteem, and ofsatisfaction in the birth process. An overwhelming sense offailure takes the place of the pride the parent expected to feel in asuccessful conclusion to month or years of hopes and plans.Profound grief is the normal response to such losses, characterizedby preoccupation with each element of the loss and its particularmeaning to the self (p. 300).GIVING of oneself. Giving of oneself, the fourth maternal task ofpregnancy, captures all that the women who knew about their baby's107heart 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 waysthat the women fulfilled this task. At the same time, many felt likethere was nothing they could do. There was a sense of helplessness asthey waited for the baby's birth knowing that their willingness to giveof themselves would not necessarily mean that their infant would bealright. Stainton et al (1992) found that during the high risk pregnancy,there was no guarantee of outcome related to the giving and mothersin this study were painfully aware of this as they anticipated the birthof 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 feltthat this time did not come fast enough, despite their uncertainty aboutwhat their baby's condition, and their fears that the baby would die.Rubin (1984) found that as women approached their labour anddelivery, despite their compounding fears about the labour itself andthe outcome of the birth, they could not wait for delivery. They keenlyanticipated their "wished-for child" and longed to be freed of thepregnancy. Several women were surprised that they did not thinkabout their baby during the delivery considering their worries since theantenatal diagnosis of CHD. Rubin found that as the pain of labourincreased, the considerations of the child receded. Fears related to the108child were replaced by the apprehension raised with each contraction.Despite the all-consuming thoughts of and worries for the anticipatedbaby during the pregnancy, the all-consuming nature of childbirthdominated the labouring mother.Once the baby was born, most mothers expressed relief that theirbaby was okay. This could be viewed as an unusual response, in thatmany babies were taken from the delivery room soon after birth forimmediate medical attention. Rubin (1984) found that "once deliveryoccurs, whatever the outcome, fear disappears" (p. 132). Perhaps thisresponse, coupled with the mothers' tendency to have prepared for theworst 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 thedelivery 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 aneagerness in the mothers to replace their fantasized picture of theirbaby with direct observations and that the first view of the childgenerally took in the baby's color or "generalized activity such as cryingrather 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 theirbaby in the delivery, helps to account for the descriptions the mothersprovided about their newborn baby.109Some women expressed surprise that they did not think abouttheir baby during labour. Colman and Colman (1991) view pregnancyas a psychological experience and describe the woman's feeling thatchildbirth creates an opposition between her needs and the baby'sneeds.She may fear that the people taking care of her would save thebaby before they would save her. The fear is rooted in a deepinternal struggle. A woman wants to love her baby and do what isbest for it, but at the height of a difficult labor, the greater needmay be for immediate relief. The baby does not exist for her at thatmoment (p. 110).This helps to explain why some mothers did not think about theirbabies despite their previous concern and worry about how the babywould tolerate labour and delivery. Colman and Colman (1991) alsostate that some women want to get through delivery because they aretotally preoccupied with their baby. Several women rememberwanting to get the baby "out" as quickly as possible because they wereconcerned about the baby's heart problem.Colman and Colman (1991) and Kitzinger (1979, 1989) both vividlydescribe the relentless power of labour especially for the first-timemother. This could account for the finding that the two primipara inthe study both described a total lack of awareness of the baby duringlabour.Many women were afraid that their babies would not toleratevaginal delivery, but all eight women had their babies vaginally. Theonset of labour can be stopped by the woman's fears related to the110"threats and dangers" of the labour and the unfinished work ofpregnancy (Rubin, 1984). The observation that five of the eight womenin this study had their labours induced cannot be accounted for in theliterature. As well, there is no literature that contributes to furtherunderstanding the role fathers played in the labour and delivery.The Overall ExperienceThe experience of parents who knew about their baby's heartproblem 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 byparticular responses. Pertinent concepts from the literature have beenused in the discussion of these findings to enhance our understandingof parents' experience of antenatal diagnosis of CHD.As well, understanding of their experience is enhanced by notingparents' reflections on their overall experience. Parents were glad thatthey knew of their baby's heart problem antenatally. They weregrateful for the preparation time, but at the same time found theexperience difficult:F: ... I don't know. It's nice to know beforehand, but it justmakes it hard the last four months when you know there'ssomething wrong and you're sort of just counting everyday, oneless, 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.111M: It's hard, but you know like you're prepared.M: It's very painful, you know, the pain, but at least you'reprepared you know. You know a little bit.As well as having the opportunity to prepare themselves andothers close to them, parents were glad they "knew ahead" because"everybody just sort of knew what they could do and what was going tohappen and you know we were informed .... It just made you feel alittle 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 asthe intensity of the experience; "it was too much. Things were prettyrough." Another mother remembered the emotion:M:^So I am crying for, well, from the start that we knew andfrom the night that I gave birth, you know, like every night, everynight ... very well very tough .... It was really, I feel really badbecause it is really positive that there's something wrong with thebaby, now every night, I'm crying and crying.Another parent described the overall experience as "a rollercoaster ride" and used anxiety, fear and terror to describe theexperience:F: Well anxiety. (Anxiety) First words, yes (Okay) Nothing iscloser.M: Yeah.F: Just anxious and then ultimately, it was like oh when yourun 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, wecouldn't stop our lives totally, like we could, I mean you can do it.112The duration of the experience was also described by manyparents. One mother said, "It seemed like a very, very drawn outexperience." Her husband added, "And it seems like I can remembereach month I knew what was going on, but it just seemed like itdragged out."Another father talked about all the waiting:F: There's a lot of waiting involved .... Cause it starts right fromlike 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 wewait 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 stableor is he going to have to go in [to surgery] real quickly?Knowing, but not knowing characterized parents' overallexperience of finding out about their baby's heart problem antenatally.They received a diagnosis at the time of the fetal echocardiogram, butthe actual outcome could not really be known until the baby was born.M: Yeah because you didn't know what was, what was going tohappen. There was just so many things that we were fed thatcould happen, this could happen. It like, okay, but what's going tohappen [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 wasgoing to come out, when she came out whether she was going tocome out pink or blue, and explained what would happen if shecame out blue.113SummaryA description of the experience of parents who knew of their baby'sheart problem before the baby was born has been presented in thischapter. The concepts of uncertainty, grief and maternal tasks ofpregnancy were discussed in relation to the findings of this study andunderstanding of the findings was enhanced. Parents' reflections oftheir experience overall concluded the chapter and pointed to the twoobvious, yet crucial aspects of the overall experience of the antenataldiagnoses of CHD: the diagnosis itself and the timing of the diagnosis,that is, during pregnancy. It is as if the diagnosis is received inprinciple only, because the baby to whom the diagnosis belongs is notreceived at the same time. The rest of the pregnancy must transpirebefore the reality of baby's heart defect will be known. Theimplications of this knowing, but not knowing are many and will bepresented in the final chapter after a statement of study conclusions.114CHAPTER 5Conclusions and ImplicationsIntroduction This study was designed to discover and describe the experience ofparents who knew about their baby's congenital heart defectantenatally. With advances in obstetrical ultrasound and fetalechocardiography , an increasing number of parents are learning oftheir baby's congenital anomaly before the baby is born. Little is knownabout the experience of such parents, particularly parents of babies withcongenital heart defects.A detailed review of the literature and consideration of Kleinman's(1978) cultural system model revealed that the literature pertaining toantenatal diagnosis represents the perspectives of those in theprofessional sector. The "notions" or "informal descriptions" of whatthe antenatal diagnosis of CHD means for parents and families has notbeen studied. An explanatory model from the popular sector isnecessary to plan and provide quality nursing care for this growingpopulation.The qualitative method of phenomenology was employed to elicitthe parents' explanatory model, to answer the question: What is theexperience of parents of children with congenital heart defects whoknew about their baby's congenital heart defect before the baby wasborn?115Data collection occurred through in-depth interviews with sixteenparents of eight babies whose CHD was diagnosed antenatally.Through a process of ongoing data collection and simultaneous dataanalysis the experience of twelve parents was described, and confirmedwith them in subsequent interviews. The conceptualization of theexperience was further validated and enhanced through interviewswith two additional couples. As well, two nurses, one havingexperience with families of children with CHD and the other withfamilies of children with spina bifida, confirmed the transferability ofthe findings. They recognized the described experience from theirprofessional association with families of children with congenitalanomalies.The parents' experience of knowing about their baby's heart defectantenatally occurred in three sequential phases. The first phase,Suspicion to Diagnosis, began when an obstetrical ultrasound raisedsuspicion regarding their baby's heart. The second phase, Diagnosis toDelivery, began when the suspected heart defect was confirmedthrough a fetal echocardiogram, and lasted until the onset of labour.The third phase, Birth to Relief, occurred at birth when the parentsdiscovered what the heart defect meant for their child.As parents reflected on their experience of knowing about theirbaby's heart problem antenatally, they all stated that they valued theinformation they received antenatally; "We're glad we knew ahead oftime." As well, all parents found the experience difficult. For both116mothers and the fathers, the first phase was characterized by grief anduncertainty. The second phase was also filled with uncertainty asparents awaited the birth of their baby, hoping for the best and yetfeeling that they had to prepare for the worst. Again, both the mothersand the fathers were involved in this phase, trying to imagine whattheir 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, thebaby's condition was better than what they had expected and preparedfor.Several conclusions are drawn from these findings. From theseconclusions, implications for nursing practice, education, and researchare articulated.Conclusions 1. Three phases characterize parents' experience of knowingabout their baby's heart problem antenatally. Each phase is distinct interms of what both the mothers and fathers experience and how theyrespond to their experience.2. The first phase, Suspicion to Diagnosis, is the most intensephase as parents wait for confirmation of the suspected heart defect andthen struggle to determine the meaning of the diagnosis for theiranticipated baby. This phase is characterized by grief responses anduncertainty. Parents have difficulty processing information during thisphase.1173. The second phase, Diagnosis to Delivery, is characterized byongoing uncertainty and grief responses which occur in a roller coasterfashion. Both the fathers and the mothers try to imagine what theirbaby will be like, considering the heart problem, and prepare for theworst while at the same time hoping for the best. In preparing for theworst most parents prepare for the possibility that their baby may die.4. Most information that parents receive regarding their baby'sheart problem antenatally is medically focused. Because it comes froma 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 totheir baby's heart problem. They are afraid that those attending tothem during labour and delivery will not know about their baby'sheart problem and that the baby may die during labour or at birth.6. During labour, some mothers are constantly aware of theirbaby while others do not think about their baby. The ones who werenot aware of their babies during labour are surprised by this when theythink back on their labour and consider how much they worried sincethe antenatal diagnosis. During labour, the fathers keep a close watchon the baby's condition by observing the baby's heart rate monitor.7. The third phase, Birth to Relief, when the baby is born, ischaracterized by the parents' relief that the baby's condition is betterthan what they had expected and prepared for. Relief occurs despite the118immediate medical intervention that many babies with CHD requireafter birth.8. Parents value the information they receive antenatallyregarding their baby's heart problem. Although this experience isdifficult for them, they feel that the antenatal diagnosis affords themthe opportunity to prepare themselves for their child's birth.9. Parents need support, consistent and accurate information, andanticipatory guidance from the time that the antenatal diagnosis ismade.10. The experience of parents who have had a previous child withCHD is similar to those who have not, although perhaps less intense.These parents tend to anticipate a more positive outcome than do theparents who have not had a previous child with CHD.Implications The antenatal diagnosis of CHD is occurring with increasingfrequency as the technology of perinatal ultrasonography and fetalechocardiography advances and becomes more available to women.The benefits of these advances from a medical perspective are beingrecognized as the births of babies with known CHD can be planned andcarried out in facilities with tertiary pediatric intensive care required bymany of these babies. Parents value this advantage for their baby, but atthe same time express how difficult the experience of antenataldiagnosis is. The implications for nursing are many and present119exciting challenges for nurses in perinatal, pediatric cardiology, andcommunity nursing.Practice Implications Parents who find out about their baby's heart problem antenatallyface difficult challenges as they come to terms with the news of theirbaby's defect and must incorporate this devastating information intothe image of their anticipated baby. They grieve the loss of theirexpected perfect baby and yet the reality of this loss is not fully knownuntil the baby is born. Uncertainty characterizes their experience andthe parents' anxiety increases as they anticipate labour and delivery.Until recently, nurses have had minimal involvement with theseparents. There is, however, an important role for nurses to play duringall phases of the parents' experience of knowing about their baby'sheart defect antenatally.Nursing support must be available to the family from the time ofraised suspicion regarding the baby's heart. Community health nursesor nurses involved with the family through childbirth education, or asnurse midwives, are in an ideal position to provide supportive care asthe parents anxiously await investigation of the suspected heart defect.Anticipatory guidance regarding the intensity of the experience if thesuspicion is confirmed could be provided, as well as encouragementthat both parents be present at the fetal echocardiogram.Once the suspicion has been confirmed through the diagnosis of acongenital heart defect, a clinical nurse specialist (CNS) or advanced120practice nurse specializing in pediatric cardiology and family nursingmust be available to provide support and anticipatory guidance as theparents grieve the loss of their perfect baby, experience uncertaintyrelated to the diagnosis, and prepare for their baby's birth. Ongoingassessment of the parents' understanding of the heart defect and theimplications of the condition, followed by appropriate and timelyeducation, could play a vital role in decreasing parents' uncertainty andensuring that parents are processing the information that they arereceiving and that they are not receiving any misinformation (e.g.,baby's with CHD being stillborn. There is no higher incidence ofstillbirth among babies with CHD). The CNS can also ensure thatparents know their resources for information and support in thetertiary perinatal and pediatric facilities, as well as in their owncommunities.Because some parents received misinformation, implications ofthis study relate to the provision of specialized information by bothnurses and physicians. Ideally, information regarding the congenitalheart defect should be provided to parents by the pediatric cardiologistand the cardiology CNS only. Likewise, information regarding theongoing pregnancy and anticipated labour and delivery should comeexclusively from the perinatologist and the CNS in perinatology.These specialists need to communicate with the family physicians andcommunity health nurses closer to home so that the potential formisinformation at the community level can be minimized as well.121The prolonged time factor involved in most antenatal diagnosesprovides many opportunities for misinformation to be conveyed asparents seek information and reassurances over time. Thischaracteristic of antenatal diagnosis, however, also provides theopportunity for methodical and comprehensive communicationbetween all members of the health care team regarding the needs of thefamily anticipating the birth of their baby with CHD as well as the careprovided by each member of the team.As the birth of the baby approaches, expert nursing care is neededto help the parents prepare for labour, considering their addeduncertainty related to their baby's heart problem. Misconceptions andfears related to the baby dying during birth, not being able to tolerate avaginal delivery, and not crying at birth need to be addressed jointly bythe cardiology and perinatal CNSs.Nurses caring for parents during the labour and delivery have animportant role to play in supporting both the mother and the father.Reassurances are necessary regarding the baby's condition andacknowledging parents' added uncertainty . Parents need to beconfident that those attending them during this crucial time have afull understanding of their baby's condition and will respondaccordingly. Labour and delivery nurses should have completeinformation about the family's experience with the antenataldiagnosis, the baby's heart defect and the anticipated outcome.Advance care planning could be done by the perinatal CNS in122collaboration with the cardiology CNS and could be discussed with theparents to ensure that their concerns are addressed. Plans regarding theparents seeing the baby, holding the baby, and/or taking photographs ofthe baby before the baby is "scooped" must be discussed ahead of timewith the perinatologist and incorporated into the overall care plan.Mercer (1977) emphasizes the shock that nurses in the deliveryroom experience at the birth of a child with congenital defects. It is aloss and shock for them, as well as for the parents. The antenataldiagnosis of congenital anomalies provides perinatal nurses with theopportunity to provide planned deliberative care for these parents,benefiting the family, as well contributing to nursing practicesatisfaction. While the conclusions of this study are based on theexperience of mothers and fathers who knew about their baby'scongenital heart defect antenatally, the implications for nurses caringfor parents whose babies have been diagnosed with congenitalanomalies other than CHD may well apply.Education Implications Although antenatal diagnosis of CHD is relatively new, theimplications for education are many. Health care providers involvedwith these mothers and fathers must be knowledgeable about theparents' experience. Providers must understand the concept ofuncertainty so that care decreases parents' uncertainty. Theory relatedto grief responses must also be incorporated into the practice of all123those involved in the antenatal diagnosis of CHD, so that parents canbe appropriately reassured and guided during their difficult experience.Ongoing education in the practice setting is essential to bring thecurrent care providers up to date regarding the experience of theparents and their needs. Physicians, ultrasound technologists andnurses are the key groups that should be targeted for this education.CNSs in cardiology and perinatology are in the ideal positions toprovide education for nurses providing care for parents during labourand delivery and following the birth of the baby, teaching about theneeds of the parents and the implications of the known heart defect onthe various aspects of the perinatal experience.One final implication for education is the need for educationalmaterials for parents and professionals regarding the experience ofantenatal diagnosis of CHD. These teaching materials, in the form ofbooklets, pamphlets, computer aided instruction, and/or audiovisualtools could be used with the parents to decrease their uncertaintyrelated to their baby's heart defect, as well as with the health careprofessionals caring for parents and their babies before, during and afterthe birth. Education tools could be adapted for use by parents whosebabies are diagnosed with other anomalies antenatally and by theprofessionals involved.Research Implications Research in the area of antenatal diagnosis of congenitalanomalies is sparse and in the area of antenatal diagnosis of CHD,124nonexistent. The implications for nursing research therefore, arenumerous. The method employed in this study was effective ineliciting the parents' explanatory model of their experience of theantenatal diagnosis of their baby's CHD. This study therefore, could bereplicated with other parent populations and valuable informationregarding the experience of parents who, for example find out abouttheir baby's spina bifida antenatally, could be gained. Comparisonscould be made among the various groups of parents.The relationship of uncertainty and the antenatal diagnosisexperience requires further investigation. For example, what are thekey factors that decrease or increase uncertainty for these parents? orwhat is the nurse's role in influencing parent uncertainty?The influence of the antenatal diagnosis on the maternal tasks ofpregnancy requires further study, as does the role of the fathers that hasbeen discovered in this study, but is not confirmed elsewhere in theliterature. What are the paternal tasks of pregnancy and how are theseaffected by the antenatal diagnosis of CHD or other congenitalanomalies?As nurses begin to provide care for parents who find out abouttheir baby's heart problem antenatally, the influence of their care onparents' experience will need to be studied. The evaluation ofeducation materials that are developed for use by parents andprofessionals will provide further opportunities for research. Thisstudy was limited to the parents whose babies with CHD were doing125well. The experience of parents whose baby's antenatal diagnosis ofCHD results in the loss of their baby through termination of thepregnancy or death soon after birth warrants nursing investigation aswell.Increasing numbers of parents experience the antenatal diagnosisof their baby's CHD; there are many parents however, whose baby'sheart defect is not diagnosed until after birth. Comparative studiesbetween these two groups of parents could provide valuableinformation 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 labourinduction in this group and what are the implications of this for theparents and baby? Second, how much time is allowed for the baby andparents to be together following the birth of the baby and whatinfluences the decision to remove the baby from the delivery room?Are any of the babies unnecessarily separated from the parentsimmediately after birth, that is, when still asymptomatic, because aheart defect has been diagnosed antenatally? The advantages oftechnology are valuable, but the influences of technology on theexperience of those that are at the receiving end must be examined.SummaryThe purpose of this study was to discover and describe theexperience of parents who knew about their baby's congenital heart126defect antenatally. In Chapter One, the problem was presented as wellas an overview of how the study would be carried out. In ChapterTwo, a review of selected literature revealed the lack of knowledgepertaining to the parents' experience of antenatal diagnosis of CHD andChapter Three presented the method employed to address the researchquestion. In Chapter Four, study findings were presented anddiscussed in terms of related literature.Overall, parents who knew about their baby's heart problembefore their baby was born valued the information that they receivedantenatally. They were "glad" that they knew about their baby's heartproblem "ahead of time", but the not knowing inherent in the timingof the diagnosis, during the pregnancy, contributed to the experiencebeing difficult for them. Nursing has a role to play with parents whofind out about their baby's heart defect antenatally, as the implicationsarticulated in this last chapter indicate.127ReferencesAllen, R. E. (Ed.). (1990). The concise Oxford dictionary. NewYork: Oxford University Press.Anderson, J. (1992). Process of data analysis. Unpublished paperpresented in Nursing 522, University of British Columbia.Benkendorf, J. L. (1987). Grievings and believings: Helpingparents through imperfect beginnings. Birth Defects: OriginalArticle Series, 23(6), 25-36.Bristor, M. W. (1984). The birth of a handicapped child: Awholistic model for grieving. Family Relations. 33(1), 25-32.Carlson, D. E (1991). 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Nursing Forum, 16(3,4), 298-318.132APPENDIX APermission for Initial Contact133THE UNIVERSITY OF BRITISH COLUMBIA 134School of NursingT. 206-2211 Wesbrook MallVancouver, B.C. Canada V6T 2B5Fax:(604) 822-7466Permission for Initial ContactTHE EXPERIENCE OF PARENTS WHO LEARN OF THEIR BABY'SHEART DEFECT BEFORE THE BABY IS BORNWith recent advances in pediatric cardiology more and more parents arefinding out about their baby's heart problem before the baby is born. It isclear that very little is known about what this experience is like forparents. It is important for health care providers to understand thisexperience from the parents' perspective so that we can better provide thenursing care needed by these families.I am conducting a study in which I hope to discover and describe theexperience of parents of children with congenital heart defects who knewabout their baby's defect before the baby was born. The study will involveinterviewing parents about this experience. If you are interested inhearing more about the study please return this form signed to theCardiology Clinic at B. C. Children's Hospital or call the clinic nurse at875-2345 Local 7111. The faculty advisor for this study is Judy Lynam andyou can contact her at 822-7476.Thank you.Gwen Rempel R. N., B. S. N.Masters in Nursing StudentI give permission for Gwen Rempel to contact me.Name / Signature: ^Date: ^Telephone number: APPENDIX BParticipant Consent Letter135THE UNIVERSITY OF BRITISH COLUMBIA 136School of NursingT. 206-2211 Wesbrook MallVancouver, B.C. Canada V6T 2B5Fax:(604) 822-7466Participant Consent LetterTitle of the Study: A PHENOMENOLOGICAL STUDY OF THEEXPERIENCE OF PARENTS OF CHILDREN WITH CHD WHO KNEWOF THEIR BABY'S CONGENITAL HEART DEFECT ANTENATALLYInvestigator:^GWEN REMPEL R. N., B. S. N. 879-0250Masters in Nursing StudentUniversity of British ColumbiaThe purpose of this study is to discover and describe the experience ofparents of children with congenital heart defects who knew about theirbaby's heart defect before the baby was born. The study will involveinterviewing parents about this experience.I understand that:-participation in this study is entirely voluntary and refusal toparticipate will in no way affect the present or future medical or nursingcare that my child receives.-I can withdraw from the study at any time or refuse to answer anyquestions or discuss any topic, with no effect on my child's present orfuture medical or nursing care.-there will be a maximum of three interviews of approximately one houreach. These will take place in my home or at another location selected byme..../2-2--the interviews will be tape recorded and I can request erasure of any tapeor portion of tape at any time during the study.-the tapes will be transcribed (typed) and any information identifying mepersonally 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 familymembers 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 GwenRempelThe faculty advisor for this research project is Judith Lynam and I cancontact 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: ^137APPENDIX CTrigger Questions138Trigger questions1. Can you think back to when you first heard about thepossibility of your baby having a heart problem? Tell about thatexperience. or What were feeling at that time?2. As you think about the time from when you first foundout 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 babyand the problem that had been suspected?5. What stands out in your mind when you think about yourbaby being born?6. What about knowing about your baby's problem ifanything influenced your experience around the time your babywas born?7. Is there anything else that you would like to tell that isrelated to your experience of knowing about your baby's heartproblem before he or she was born?139APPENDIX DDemographic Data140DEMOGRAPHIC DATAInformation About Child Age of child:^ Sex of child: Female^MaleDiagnosis: How many weeks gestation was the baby when you found out about the heartproblem: ^Hospital of birth: ^Length of time in hospital following birth: ^Medical or surgical treatment received:Information About Other Family Members:141SIBLINGSAge: Sex: Female^MaleFemale^Male./2-2-PARENTSAge of mother: ^Cultural background ^Age of father:  ^Cultural background How many years together: ^Educational Level:Mother^FatherUniversity or college graduateSome university or collegeHigh school graduateSome high school education ^Less than high school educationYearly Annual Family IncomeLess than $25, 000$26,000 to 35,000$36,000 to 45,000$46,000 to 55,000Greater than 55,000142APPENDIX EEthics Approval143144The University of British Columbia^B92-214Office of Research ServicesBEHAVIOURAL SCIENCES SCREENING COMMITTEE FOR RESEARCHAND OTHER STUDIES INVOLVING HUMAN SUBJECTSCERTIFICATE^of APPROVALINVESTIGATOR: Lynam, M.J.UBC DEPT:^NursingINSTITUTION: ChildrensTITLE:^A phenomenological study of the experienceof parents of children with congenitalheart disease who knew of their baby'sheart defect antenatallyNUMBER:^B92-214CO-INVEST:^Rempel, G.R.APPROVED:^S EP 1 5 1992The protocol describing the above-named project has beenreviewed by the Committee and the experimental procedures werefound to be acceptable on ethical grounds for researchinvolving human subjects.44L Dr. R.D. pratleyDirecto , Research Servicesand Acting ChairmanTHIS CERTIFICATE OF APPROVAL IS VALID FOR THREE YEARSFROM THE ABOVE APPROVAL DATE PROVIDED THERE IS NOCHANGE IN THE EXPERIMENTAL PROCEDURES%%AleBritish Columbia's^,s•Children's HospitalSeptember 9, 1992Gwen RempelCardiology NursingRoom 3G42B.C. Children's HospitalDear Ms. Rempel:RE: APPLICATION TO THE IN-HOSPITAL RESEARCH REVIEW COMMITTEEThe In-Hospital Research Review Committee of Children's Hospital has approvedyour proposed research project entitled "A Phenomenological Study of theExperience of Parents of Children with CHD who knew of their Baby's CongenitalHeart Defect Antenatally.Please note that while we have tried to ensure that your research application formhad appropriate signatures to persons responsible for areas of the Hospital likelyto be affected by your research, it is still your responsibility to lay out adequatelines of communication to everyone in the Hospital who is likely to be affected byyour project.Sincerely,145Ross Petty, M.D., F.R.C.P.C.ChairmanIn-Hospital Research Review Committee:voa4480 Oak Street, Vancouver, B.C. V6H 3V4 Phone: (604) 875 -2345APPENDIX FThe Experience146KNOWING BUT NOT KNOWING:THE EXPERIENCE OF PARENTS WHO KNEW ABOUT THEIR BABY'SHEART PROBLEM ANTENATALLYANTENATAL DIAGNOSISOF CHDWaiting for the "brick wall"SUSPICION TO DIAGNOSISThe Parents' ExperienceREST OF THE PREGNANCY--->^"Picking up the pieces"^--->DIAGNOSIS TO DELIVERYThe Parents' ExperienceREALITY /CONFIRMATIONOF CHD"He cried"BIRTH TO RELIEFThe Labour*"So I did all I can"*1 didn't think aboutthe baby once"*"It was an eternity"Parental Responses*"I was hoping... that it wouldbe 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*Suspicion raised*Waiting*The fetal echocardiogram*Suspicion confirmedParental 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 whatit all means"The Birth *"He cried"'Scoop and run"*"He's going to be okay"

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