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ORIGINAL ARTICLE
Heart, Lung and Circulation (2014) xx, 1–7 1443-9506/04/$36.00 http://dx.doi.org/10.1016/j.hlc.2014.03.019
Case Studies of the Perceptions of Women with High Risk Congenital Heart Disease Successfully Completing a Pregnancy§ Kylie Ngu, MB, BS, BMedSci a, Margaret Hay, PhD b, Samuel Menahem, MD, FRACP, FCSANZ b,c* a
Faculty of Medicine, Dentistry and Health Sciences, University of Melbourne Health Professional Education and Educational Research, Monash University Monash Heart, Monash Medical Centre, Melbourne, Australia
b c
Received 24 July 2013; received in revised form 23 February 2014; accepted 17 March 2014; online published-ahead-of-print xxx
Purpose
Women even with moderate to severe congenital heart disease (CHD) seek motherhood despite posing significant health risks to themselves and their infant. This study explored their motivations and perceptions and compared them to those of women with low risk CHD who conceived.
Procedures
Twenty women over 18 years with CHD who had a successful pregnancy were recruited, half of whom were identified as having a high risk cardiac abnormality. They completed a questionnaire and a semi-structured interview following which a thematic analysis was employed. Their medical records and clinical status were also reviewed and their current cardiac status graded by their attending cardiologist.
Findings
Women with high risk (moderate to severe) CHD (n = 10) appeared to have similar motivations for conceiving as women with low-risk (mild) CHD (n = 10). Their decision to conceive seemed based on their own and at times unrealistic perceptions of the consequences of their CHD.
Conclusions
Women with mild or more severe CHD had similar motivations to conceive tending to downplay the seriousness of their CHD. Their drive for motherhood appeared to be stronger than the drive for self care. It behoves clinicians, both obstetricians and cardiologists caring for women with high risk CHD to be knowledgeable of the effects of the CHD on the pregnancy and the impact of the pregnancy on the cardiac status.
Keywords
Congenital heart disease Pregnancy Motivations Risks Perceptions
Introduction Advances in medicine and surgery over the past few decades have allowed approximately 85% of infants with congenital heart disease (CHD) to reach adulthood [1] resulting in an increasing number of women with CHD who wish to conceive. Little attention has been paid to the motivations of women with CHD proceeding to pregnancy, though there have been studies reviewing the motivations of healthy §
women. These motivations vary and include the women’s innate biological predisposition to have children encouraged by their personal goals [2] as well the expected norms of society, both religious and cultural [3], and the influence of their partners [4] and close family and friends [5]. Haemodynamic changes occur in normal pregnant women as their bodies adapt to increased demands required for foetal growth, the stresses of labour and the post partum period [6] (Fig. 1). These changes becoming increasingly
Presented in part, Cardiac Society of Australia and New Zealand, Perth 2011.
*Corresponding author at: Department of Obstetrics and Gynaecology and School of Psychology and Psychiatry, Monash University, Monash Medical Centre, 246 Clayton Road, Clayton, Victoria 3168, Australia. Tel.: +61-3-9594 6666; Fax: +61-3-9576 1352, Email: [email protected] © 2014 Australian and New Zealand Society of Cardiac and Thoracic Surgeons (ANZSCTS) and the Cardiac Society of Australia and New Zealand (CSANZ). Published by Elsevier Inc. All rights reserved.
Please cite this article in press as: Ngu K, et al. Case Studies of the Perceptions of Women with High Risk Congenital Heart Disease Successfully Completing a Pregnancy. Heart, Lung and Circulation (2014), http://dx.doi.org/10.1016/j. hlc.2014.03.019
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Figure 1 Schematic diagram highlighting the physiological haemodynamic changes that occur during pregnancy (courtesy of Prof R Harper).
more significant in women with CHD who are faced with an additional mortality and morbidity [7]. Only 1% of pregnant women have heart disease. However it remains an important cause of maternal mortality and morbidity in western society [8]. It is associated with increased neonatal mortality and the early onset of labour [9]. In addition, mothers with CHD have an increased risk of at least four to six times the normal population, of giving birth to a child with a heart defect [8], with a higher transmission rate in genetically inherited heart disease [10]. Yet women with CHD continue to conceive despite the increased risks to both themselves and their unborn child. They seem to have a tendency to underplay and/or deny the severity of their medical condition, placing considerable reliance and therefore responsibility on their clinicians [7]. Most women born with heart abnormalities lead a life relatively unaffected by their CHD. Others may continue to have residual or secondary lesions even after surgical correction, leaving them chronically disabled, with a suboptimal quality of life [11] and a limited capacity to meet the demands of physical and social activities [12]. With such a burden on their health, their decision to conceive and complete a pregnancy is a complicated, unique and a constantly evolving process [13]. Their perception of the pregnancy risks seem to play an important role in their decision making and include such factors as the women’s self-image, past history, healthcare and the concept of the unknown which includes the uncertainty of the future, conceiving and having a successful pregnancy [14]. The objectives of this study were to (A) understand the motivations of women with CHD to bear children, (B) test the correlation of the clinicians’ and patients’ assessment of risk of the CHD to the mother and child, and (C) assess if there are any discernable differences between the cohort with low risk CHD and those with high risk CHD.
Methods Twenty women over 18 years of age with CHD who had completed one or more successful pregnancies were recruited from a tertiary centre and private clinics. They were subsequently divided according to the severity of their CHD. One group consisted of women with clinically mild CHD (low risk group) as assessed by the cardiologist, and with an expected lower risk of complications arising from the pregnancy (n = 10). Another group consisted of women who were assessed as having moderate to severe heart disease (high risk group) with a potentially higher anticipated risk of complications arising from their pregnancy (n = 10). The attending cardiologists based their assessment on the women’s current cardiac findings, their functional capacity and a review of their past history and records, and their cardiac interventions, if any, whether surgical and/or by catheterisation. The women themselves also rated the severity of their heart condition which was compared with that made by their cardiologist. Women were excluded from the study if they were deemed by their clinicians as emotionally or physically too unwell to be interviewed, were not fluent in English or were intellectually handicapped. A written questionnaire recorded basic demographic information and included a list of the symptoms experienced. A semi-structured interview specifically constructed for this study and conducted by a single interviewer (K.N.), was recorded digitally and took approximately 30 minutes to complete. The interviews were carried out in person wherever possible and if not, via the telephone. The questionnaire focused on the women’s motivations for having a pregnancy and the effect of their perception and understanding of their CHD and its associated implications with respect to the pregnancy. Supportive prompts were used
Please cite this article in press as: Ngu K, et al. Case Studies of the Perceptions of Women with High Risk Congenital Heart Disease Successfully Completing a Pregnancy. Heart, Lung and Circulation (2014), http://dx.doi.org/10.1016/j. hlc.2014.03.019
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when participants indicated uncertainty about the questions asked, or to encourage the women to expand on their motivations, or perceptions and understanding of their heart defect. A thematic analysis was conducted of the interviews highlighting the women’s motivating factors for conceiving and their perceptions of the severity of their cardiac status. The women’s responses were reviewed in order to identify recurrent patterns and themes regarding their motivation for conceiving. After an initial reading the responses were reread and annotated with emergent themes which were then grouped into similar categories. The women’s responses were re-examined within the framework of the emergent themes and the final categories determined as is the standard practice for a thematic analysis of qualitative data. Saturation is normally reached by 20 which was the sample size of this study. Inter-rater reliability was determined via the following process. Four selected interview transcripts, two each from women with or without CHD that covered a wide range of themes were also coded by a colleague not involved with the study to compare with the coding done by the interviewer. The colleague had a 15 minute information session on the coding scheme before independently reading the transcripts and assigning codes as per the coding scheme. Next, the two coders compared results and discussed any differences. Informed consent was obtained from each participant and ethics approval was granted by the relevant hospital and university committees conforming to the ethical guidelines of the 1975 Declaration of Helsinki.
Results Clinicians’ Rating of CHD Severity Twenty women with CHD who had completed one or more successful pregnancies were recruited over a nine month period from August 2011 to march 2012. Their demographical details are noted in Table 1. One group of 10 women was considered by their attending cardiologist to have mild CHD (such as an atrial septal defect) with little or no haemodynamic consequences (Table 2). The second group comprised 10 women who their cardiologist considered to have moderate or a more severe residual or un-operated congenital heart abnormality at the time of the pregnancy (Table 3). Six women were classified as having ‘‘moderate’’ CHD (such as post-operative Fallot’s tetralogy with moderate to severe pulmonary incompetence), four women with moderate to severe CHD (such as a Fontan circulation for a univentricular heart from a double inlet left ventricle). Sixteen of the women had previous surgery for their CHD when they conceived. In the sample extracts there was a moderate level of agreement between the two coders (approximately 72%). Disagreement between the coders was resolved through discussion and agreement by both coders to changing one of the assigned codes by one of the coders (one instance) or by adding a needed code that was missing in the extracts (eight instances).
Table 1 Biographical Summary of the Study Sample.
Mean Age (years),
Women with
Women with
mild CHD
moderate to
(low risk)
severe CHD
n = 10
(high risk) n = 10
35.8 (5.9)
28.9 (3.5)
Standard Deviation Nationality/Ethnicity Australian Other Religion
8
9
2
1
Catholic
4
4
Other Christian
3
5
No religion
3
1
Married
6
5
Defacto
2
2
2
3
Marital Status
Single Employment status Employed
6
7
Unemployed
1
1
Volunteer Work
3
2
Education Tertiary
8
4
High School
2
5
-
1
Unknown Parity 1 Child
4
5
2 Children
4
3
3 Children
2
2
38.3
37.6
Normal Emergency Caesarean
6 0
2 2
Elective Caesarean
1
5
Forceps
2
1
Vacuum Extraction
0
0
Mean gestational age at Delivery (weeks) Mode of delivery
Unknown CHD in Children
1
-
2
0
CHD - congenital heart disease
Women’s Motivations, Perceptions and Risk Exposure Similar motivating factors appeared to have influenced both groups of women in their decision to proceed with a pregnancy (Table 4). Five major themes were elucidated from the interviews: (a) The influence of external (cultural, social and religious) expectations placed on women to have children (b) The influence of existing relationships from a partner, family and friends
Please cite this article in press as: Ngu K, et al. Case Studies of the Perceptions of Women with High Risk Congenital Heart Disease Successfully Completing a Pregnancy. Heart, Lung and Circulation (2014), http://dx.doi.org/10.1016/j. hlc.2014.03.019
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Table 2 Group 1 Mild CHD - Patients’ and Clinicians’ Understanding of the Patients’ Heart Abnormality. Patient’s diagnosis
Clinician’s diagnosis
Surgery
Patient’s
Clinician’s
prior to
perception of
assessment
pregnancy
their CHD
of patient’s
severity
CHD severity
Concordance
Pulmonary atresia VSD MAPCAs
Pulmonary atresia VSD MAPCAs
Yes
Mild
Mild
Yes
Hole in the heart
Moderately large ventricular septal
Yes
Mild
Mild
Yes
defect and patent foramen ovale/atrial septal defect Transposition of the great vessels
Transposition of the great vessels
Yes
Mild
Mild
Yes
Coarctation of aortic valve
Coarctation of aorta, mild aortic valve and subaortic stenosis
Yes
Mild
Mild
Yes
Bicuspid aortic valve and
Bicuspid aortic valve and coarctation
Yes
Mild
Mild
Yes Yes
coarctation of aorta
of aorta
Heart disorder
Ebstein’s anomaly of tricuspid valve
Yes
Mild
Mild
ASD
Atrial septal defect
No
Mild
Mild
Yes
VSD with mild aortic
VSD and mild aortic regurgitation
No
Mild
Mild
Yes
Tetralogy of Fallot’s Mitral valve dysplasia
Yes No
Mild Mild
Mild Mild
Yes Yes
incompetence Tetralogy fallot Mitral valve incompetence VSD - ventricular septal defect MAPCAs - major aortopulmonary collateral arteries ASD - atrial septal defect
Table 3 Group 2 Moderate to Severe CHD - Patients’ and Clinicians’ Understanding of the Partients’ Heart Abnormality. Patient’s diagnosis
Clinician’s diagnosis
Surgery
Patient’s
Clinician’s
prior to
perception of
assessment
pregnancy
their CHD
of patient’s
severity
CHD severity
Concordance
Heart murmur
Transposition of the great vessels
Yes
Mild
Moderate/severe
No
Congenital heart disease
Double inlet left ventricle
Yes
Mild
Moderate/severe
No
Heart condition
Transposition of the great vessels,
Yes
Mild
Moderate
No
ventricular septal defect, pulmonary stenosis Fallot’s tetralogy
Fallot’s tetralogy
Yes
Mild
Moderate
No
Hole in heart Aortic stenosis
Fallot’s tetralogy Aortic valve stenosis
Yes No
Mild Mild/
Moderate Moderate
No No
Transposition of the great vessels
Transposition of the great vessels
Yes
Mild
Moderate
No
Ventricular septal defect and
Aortic stenosis and closed
Yes
Moderate/
Severe
No
moderate
aortic stenosis
ventricular septal defect
severe
Subaortic stenosis
Subaortic stenosis
Yes
Mild
Moderate
No
5x open heart operations aortic
Double outlet right ventricle,
Yes
Mild
Severe
No
valve replacement x2
ventricular septal defect, transposition of great vessels and pulmonary stenosis
Please cite this article in press as: Ngu K, et al. Case Studies of the Perceptions of Women with High Risk Congenital Heart Disease Successfully Completing a Pregnancy. Heart, Lung and Circulation (2014), http://dx.doi.org/10.1016/j. hlc.2014.03.019
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Table 4 Motivations of Women with CHD Proceeding to Pregnancy. Themes Influence of existing relationships - Partner
Low risk CHD (n = 10)
High risk CHD (n = 10)
8
6
8
7
- Pregnancy as a personal goal and desired experience
7
8
- Financial stability
7
6
- Past experiences of motherhood and children
5
5
5 2
6 4
- Family and friends Personal Influences
Biological Influences - Basic biologic drive - Considerations of age and reproduction related changes Cultural and social influences
2
0
Termination of pregnancy not considered a viable option
1
4
(c) The women’s own personal goals and desired experiences in life (d) Presumed innate ‘‘biological’’ urges of the women and their inherent desires to bear children while being cognizant of the reproductive related changes as women aged (e) Where termination of pregnancy was not considered a viable option Both groups of women expressed concerns for their own health and that of their unborn child. Nine of the women in each group expressed concerns about the risks to themselves, including not surviving the pregnancy, and to their infant. Eight women, three from the low risk group and five from the high risk group, raised concerns about the possibility of their infant having a heart abnormality but only two had infants with CHD – a moderately large ventricular septal defect being missed on an earlier foetal echocardiogram while the second not having had a foetal echocardiogram, the mother being unaware that she had a significant atrial septal defect until after her infant was diagnosed as having aortic valve stenosis. She previously was told she had a murmur which was regarded as being innocent. The other 18 women had normal foetal cardiac scans which may have had a reassuring influence on them to continue with the pregnancy. Despite their concerns, the women, especially in the high risk group, generally placed a greater reliance on how they perceived and understood their heart condition rather than the severity as assessed ‘‘objectively’’ by their attending cardiologist. Factors that seemed to contribute to the women’s perception and understanding of their CHD were: (1) How well they had adapted and lived with their heart condition, including developing coping mechanisms of denial and ignorance (2) Their reliance on their clinicians to advise against a pregnancy if they deemed the health risks too great (3) Their knowledge and understanding of the nature of their condition
(4) Their past experiences of having lived with the heart defect for all the years before they fell pregnant Having successfully adapted to their heart defects they regarded themselves as being of low risk even when going through a pregnancy. Living with their CHD was specifically seen as a ‘‘normal’’ way of life by 50% of the women in the low risk group and even included 40% of women in the high risk group. Two women in the high and three women in the low risk groups appeared to have little knowledge of their heart defect, raising the question of whether they invoked a greater degree of denial with respect to the risks to themselves and their newborn infant. The women in both the low and high risk groups seemed to perceive their clinician as a benevolent paternal/maternal figure and assumed that they would be carefully monitored and supported throughout their pregnancy. The women in addition placed unrealistic expectations on what medical advances might achieve if any complications arose. All of the women in this study had some understanding of the maternal and foetal risks. The personal experience of the study sample having lived with the CHD was also a strong contributor to their perceptions of the anticipated risks associated with pregnancy. Six of the low risk group and three of the high risk women were little affected exercise-wise by their CHD and in turn felt that their CHD did not bar them from having children. However, one of the low risk group voiced negative living experiences arising from her heart defect, whereas three of the high-risk women described similar experiences. Women who had been limited by their CHD commented on the possibility of developing complications in the pregnancy. Nevertheless, these concerns did not prevent them from proceeding with the pregnancy once they received approval from their attending clinicians. Their strong desire to have a child, similar to those of healthy women, indicated that the drive for motherhood was stronger than the drive for self care.
Please cite this article in press as: Ngu K, et al. Case Studies of the Perceptions of Women with High Risk Congenital Heart Disease Successfully Completing a Pregnancy. Heart, Lung and Circulation (2014), http://dx.doi.org/10.1016/j. hlc.2014.03.019
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These observations are illustrated through a case vignette of a woman belonging to the high risk group as she described her pregnancy: ‘‘A.’’ was 25 years old when she conceived. She was born with a major cardiac heart abnormality, namely a double outlet right ventricle, subpulmonary ventricular septal defect with malposition of the great vessels and pulmonary stenosis. She underwent multiple surgeries, including an initial Senning inflow diversion and ventricular septal defect closure, subsequent pulmonary artery banding to ‘‘retrain’’ the left ventricle when she developed a failing right ventricle, followed by an arterial switch, debanding and the placement of a prosthetic valve at the neoaortic site after the neoaortic valve failed. She had a strong wish to have her own child. ‘‘I knew that one day when we got married, I always wanted to have children’’ as she ‘‘didn’t want to go through life and not try’’. However, during her pregnancy she developed gross dilatation of her neo-aortic root posing a major health risk to herself and her unborn infant. She was admitted for bed rest and commenced on a beta-blocker but despite monitoring of her subcutaneous heparin, she had an intrauterine bleed and required an urgent Caesarean section at 31 weeks gestation. Soon after the delivery and following a cardiac catheter, she had an aortic root and valve replacement [15]. Despite being told by her clinicians that she would have an increased risk of complications during her pregnancy she claimed, ‘‘I always knew the birth would not be as normal as everyone else’’. ‘‘A.’’ expressed a strong faith in and reliance on her managing team, as she was ‘‘confident with cardiologist and obstetrician as well, felt like I was in good hands’’. ‘‘A.’’ demonstrated a tendency to downplay and deny the severity and associated risks of her condition, ‘‘I didn’t tell a lot of people the risks, because I preferred not to talk about it’’. She described her condition as ‘‘5x open heart operations, aortic valve replacement x2’’ and rating it ‘‘mild’’ in severity. She based that on her having ‘‘no problems’’ participating in social activities and she ‘‘live[s] [a] normal life’’. Subsequent to her first pregnancy and despite the major complications, ‘‘A.’’ expressed a desire for additional children. After further discussion and evaluation by her clinicians, she ‘‘decided no more children to stay safe and healthy’’.
Discussion In this small sample, there did not appear to be a difference in the motivations and perceptions of women with clinically identified mild (low risk) as compared to moderate to severe (high risk) CHD who decided to, and had successfully completed a pregnancy. The women were all equally determined to proceed with their pregnancy and regarded their heart abnormalities whether mild or severe in a similar manner. Whilst further research with a larger sample is required, an emergent question from this study is do
women with more severe CHD have a greater tendency to deny and underestimate the severity and associated risks of their CHD? The women’s perception of their CHD generally did not reflect a thorough understanding of its clinical implications, prognosis and potential complications associated with a pregnancy. Our study sample seemed to adopt similar maladaptive coping mechanisms such as denial and normalisation, reducing psychological distress and as described in Claessens, sheltering them from experiencing or acknowledging the negative repercussions of their condition [16]. Of special interest, was that the women with high risk CHD still generally spoke of their condition in the same manner as women with less severe CHD. Both groups shared similar concerns regarding maternal and infant mortality and morbidity despite varied levels of knowledge and understanding of such outcomes. Such inaccuracies may be a manifestation of the women’s lack of knowledge about their CHD and awareness of the behaviours and activities that were potentially detrimental to their health, particularly as they entered adulthood [17–19]. This void in the knowledge of the potential health complications may lead to a distorted assessment of the risks to themselves and their children [20,21]. Others have also discussed patients with CHD holding false beliefs and assumptions regarding their CHD [22,23]. Importantly, the women demonstrated a strong faith in the abilities of their clinician, including their cardiologist, and that there will (always) be appropriate medical interventions to ensure their wellbeing and that of their child’s. Their belief in, and reliance on their clinicians may be greater than their clinicians are aware of, placing a substantial responsibility on them. Women of childbearing age with CHD need to be well informed about the prognosis, implications and consequences of their heart condition and the impact of a pregnancy. At the same time it is imperative that clinicians readily address and inform their patients regarding these issues and provide sound advice when such a patient presents seeking a pregnancy. That becomes especially important for women with severe CHD where pregnancy and child birth is not a viable option. These women need to be identified early in their management to prepare them for these risks and the potential of not having children.
Study Limitations This study was of a relatively small sample size and only recruited women who had successfully completed a pregnancy. Although the questionnaire developed was not psychometrically validated as a scale, it was specifically constructed to gather qualitative data pertinent to the study drawing on relevant published literature. Future studies may wish to explore the perceptions of women with CHD who were advised against a pregnancy because of the severity of their cardiac status, who had unsuccessful pregnancies or who fell pregnant and were advised to terminate.
Please cite this article in press as: Ngu K, et al. Case Studies of the Perceptions of Women with High Risk Congenital Heart Disease Successfully Completing a Pregnancy. Heart, Lung and Circulation (2014), http://dx.doi.org/10.1016/j. hlc.2014.03.019
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Conclusions Women with moderate to severe (high risk) CHD had similar motivations for proceeding to pregnancy as women who were identified as having less severe CHD. Women with more severe CHD seemed to be equally, if not more, motivated to conceive and perceived the consequences of their CHD in a similar manner as those who were clinically identified as having mild CHD. This observation may imply that they may use greater denial and underestimation of the severity and potential risks associated with a pregnancy and their subsequent prognosis; thus they may harbour an unrealistic perception of their risk in pregnancy. However further research with a larger sample is required to accurately determine this important observation. It also implies that both the cardiologist and obstetrician caring for these patients are especially knowledgeable about the effects of the pregnancy on the CHD and the effects of the CHD on the pregnancy. Thus the onus is on the clinicians to thoroughly understand the prognosis, implications and consequences of their patients’ heart conditions and be able to provide sound advice when a patient considers the prospect of pregnancy and to ensure that these women have a realistic understanding of the risks to themselves and their newborn infant. While considerable effort is made to help parents understand what may be wrong with their infant’s and child’s heart, less attention has been paid to ensure such an education is a life long process for the affected adolescent and adult. They need to fully understand the nature of their cardiac abnormality and its implications. Such a process should begin early in adolescence, peak with transition to adult care with reinforcement at each follow-up visit. Hopefully such a proactive process may result in women with serious CHD acquiring a more realistic understanding of their cardiac status, discuss the need for contraception and may be less inclined to pursue a pregnancy which may put themselves and their newborn infant at risk.
Acknowledgements Dr Tiow-Hoe Goh and Ms Julie Dunn helped in the recruitment of the participants and collation of data. Dr Ray Wang reviewed and coded selected interviews. Prof Richard Harper kindly provided the Figure. There was no financial support for this study.
References [1] Warnes CA, Liberthson R, Danielson GK, Dore A, Harris L, Hoddman JI. Task force 1: the changing profile of congenital heart disease in adult life. J Am Coll Cardiol 2001;37:1170–5. [2] Miller WB, Pasta DJ. Behavioral intentions - which ones predict fertility behavior in married couples. Journal Applied Social Psych 1995;25: 530–55. [3] Morgan SP. Late nineteenth- and early twentieth-century childlessness. Americal Journal of Sociology 1991;97:779–807. [4] Thomson E, McDonald E, Bumpass LL. Fertility desires and fertility hers, his and theirs. Demography 1990;27:579–88. [5] Pezeshki MZ, Zeighami B, Miller WB. Measuring the childbearing motivation of couples referred to the Shiraz Health Center for premarital examinations. J Biosoc Sci 2005;37:37–53. [6] Hunter S, Robson SC. Adaptation of the maternal heart in pregnancy. Br Heart J 1992;68:540–3. [7] Reid GJ, Siu SC, McCrindle BW, Irvine MJ, Webb GD. Sexual behavior and reproductive concerns among adolescents and young adults with congenital heart disease. Int J Cardiol 2008;125:332–8. [8] Somerville J. The Denolin Lecture: The woman with congenital heart disease. Eur Heart J 1998;19:1766–75. [9] Siu SC, Colman JM, Sorensen S, Smallhorn JF, Farine D, Amankwah KS. Adverse neonatal and cardiac outcomes are more common in pregnant women with cardiac disease. Circulation 2002;105:2179–84. [10] Foster C. The limits to low fertility: A biosocial approach. Population and Development Review 2000;26:209–34. [11] Uebing A, Steer PJ, Yentis SM, Gatzoulis MA. Pregnancy and congenital heart disease. BMJ 2006;332:401–6. [12] Drenthen W, Boersma E, Balci A, Moons P, Roos-Hesselink JW, Mulder BJ. Predictors of pregnancy complications in women with congenital heart disease. European Heart 2010;31:2124–32. [13] Kilpatrick K, Purden M. Using reflective nursing practice to improve care of women with congenital heart disease considering pregnancy. MCN Am J Matern Child Nurs 2007;32:140–7. quiz 8-9. [14] Heaman M, Gupton A, Gregory D. Factors influencing pregnant women’s perceptions of risk. MCN Am J Matern Child Nurs 2004;29:111–6. [15] Hayonki Y, Cochrane AD, Menahem S, Smith JA. Neo-aortic root dilatation with saccular aneurysm formation after arterial switch operation for Taussig-Bing anomaly. J Thorac Cardiovasc Surg 2007;133:569–72. [16] Claessens P. What does it mean to live with a congenital heart disease? A qualitative study on the lived experiences of adult patients. European Journal of Cardiovascular Nurs 2005;4:3–10. [17] Kantoch MJ. Adult patients’ knowledge about their congenital heart disease. The Canadian Journal of Cardiology 1997;13:641–5. [18] Doucet SB. The young adult’s perceptions of the effect of congenital heart disease on his life style. Nursing Papers 1981;13:3–16. [19] Veldtman GR. Illness understanding in children and adolescents with heart disease. Western Med 2001;174:171–3. [20] Moons P. What do adult patients with congenital heart disease know about their disease, treatment, and prevention of complications? A call for structured patient education. Heart 2001;86:74–80. [21] Wang QF, Hay M, Clarke D, Menahem S. Association between knowledge of disease, depression and anxiety, social support, sense of coherence and optimism with health related quality of life in an ambulatory sample of adolescents with heart disease. Cardiol Young 2013;12:1–8. [22] Simko LC. Educational needs of adults with congenital heart disease. Journal of Cardiovas Nurs 2006;21:85–94. [23] Tong E. Special management issues for adolescents and young adults with congenital heart disease. Critical Care Nursing Clinics of Nth Am 1994;6:199–214.
Please cite this article in press as: Ngu K, et al. Case Studies of the Perceptions of Women with High Risk Congenital Heart Disease Successfully Completing a Pregnancy. Heart, Lung and Circulation (2014), http://dx.doi.org/10.1016/j. hlc.2014.03.019
ORIGINAL ARTICLE
Heart, Lung and Circulation (2014) xx, 1–7 1443-9506/04/$36.00 http://dx.doi.org/10.1016/j.hlc.2014.03.019
Case Studies of the Perceptions of Women with High Risk Congenital Heart Disease Successfully Completing a Pregnancy§ Kylie Ngu, MB, BS, BMedSci a, Margaret Hay, PhD b, Samuel Menahem, MD, FRACP, FCSANZ b,c* a
Faculty of Medicine, Dentistry and Health Sciences, University of Melbourne Health Professional Education and Educational Research, Monash University Monash Heart, Monash Medical Centre, Melbourne, Australia
b c
Received 24 July 2013; received in revised form 23 February 2014; accepted 17 March 2014; online published-ahead-of-print xxx
Purpose
Women even with moderate to severe congenital heart disease (CHD) seek motherhood despite posing significant health risks to themselves and their infant. This study explored their motivations and perceptions and compared them to those of women with low risk CHD who conceived.
Procedures
Twenty women over 18 years with CHD who had a successful pregnancy were recruited, half of whom were identified as having a high risk cardiac abnormality. They completed a questionnaire and a semi-structured interview following which a thematic analysis was employed. Their medical records and clinical status were also reviewed and their current cardiac status graded by their attending cardiologist.
Findings
Women with high risk (moderate to severe) CHD (n = 10) appeared to have similar motivations for conceiving as women with low-risk (mild) CHD (n = 10). Their decision to conceive seemed based on their own and at times unrealistic perceptions of the consequences of their CHD.
Conclusions
Women with mild or more severe CHD had similar motivations to conceive tending to downplay the seriousness of their CHD. Their drive for motherhood appeared to be stronger than the drive for self care. It behoves clinicians, both obstetricians and cardiologists caring for women with high risk CHD to be knowledgeable of the effects of the CHD on the pregnancy and the impact of the pregnancy on the cardiac status.
Keywords
Congenital heart disease Pregnancy Motivations Risks Perceptions
Introduction Advances in medicine and surgery over the past few decades have allowed approximately 85% of infants with congenital heart disease (CHD) to reach adulthood [1] resulting in an increasing number of women with CHD who wish to conceive. Little attention has been paid to the motivations of women with CHD proceeding to pregnancy, though there have been studies reviewing the motivations of healthy §
women. These motivations vary and include the women’s innate biological predisposition to have children encouraged by their personal goals [2] as well the expected norms of society, both religious and cultural [3], and the influence of their partners [4] and close family and friends [5]. Haemodynamic changes occur in normal pregnant women as their bodies adapt to increased demands required for foetal growth, the stresses of labour and the post partum period [6] (Fig. 1). These changes becoming increasingly
Presented in part, Cardiac Society of Australia and New Zealand, Perth 2011.
*Corresponding author at: Department of Obstetrics and Gynaecology and School of Psychology and Psychiatry, Monash University, Monash Medical Centre, 246 Clayton Road, Clayton, Victoria 3168, Australia. Tel.: +61-3-9594 6666; Fax: +61-3-9576 1352, Email: [email protected] © 2014 Australian and New Zealand Society of Cardiac and Thoracic Surgeons (ANZSCTS) and the Cardiac Society of Australia and New Zealand (CSANZ). Published by Elsevier Inc. All rights reserved.
Please cite this article in press as: Ngu K, et al. Case Studies of the Perceptions of Women with High Risk Congenital Heart Disease Successfully Completing a Pregnancy. Heart, Lung and Circulation (2014), http://dx.doi.org/10.1016/j. hlc.2014.03.019
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Figure 1 Schematic diagram highlighting the physiological haemodynamic changes that occur during pregnancy (courtesy of Prof R Harper).
more significant in women with CHD who are faced with an additional mortality and morbidity [7]. Only 1% of pregnant women have heart disease. However it remains an important cause of maternal mortality and morbidity in western society [8]. It is associated with increased neonatal mortality and the early onset of labour [9]. In addition, mothers with CHD have an increased risk of at least four to six times the normal population, of giving birth to a child with a heart defect [8], with a higher transmission rate in genetically inherited heart disease [10]. Yet women with CHD continue to conceive despite the increased risks to both themselves and their unborn child. They seem to have a tendency to underplay and/or deny the severity of their medical condition, placing considerable reliance and therefore responsibility on their clinicians [7]. Most women born with heart abnormalities lead a life relatively unaffected by their CHD. Others may continue to have residual or secondary lesions even after surgical correction, leaving them chronically disabled, with a suboptimal quality of life [11] and a limited capacity to meet the demands of physical and social activities [12]. With such a burden on their health, their decision to conceive and complete a pregnancy is a complicated, unique and a constantly evolving process [13]. Their perception of the pregnancy risks seem to play an important role in their decision making and include such factors as the women’s self-image, past history, healthcare and the concept of the unknown which includes the uncertainty of the future, conceiving and having a successful pregnancy [14]. The objectives of this study were to (A) understand the motivations of women with CHD to bear children, (B) test the correlation of the clinicians’ and patients’ assessment of risk of the CHD to the mother and child, and (C) assess if there are any discernable differences between the cohort with low risk CHD and those with high risk CHD.
Methods Twenty women over 18 years of age with CHD who had completed one or more successful pregnancies were recruited from a tertiary centre and private clinics. They were subsequently divided according to the severity of their CHD. One group consisted of women with clinically mild CHD (low risk group) as assessed by the cardiologist, and with an expected lower risk of complications arising from the pregnancy (n = 10). Another group consisted of women who were assessed as having moderate to severe heart disease (high risk group) with a potentially higher anticipated risk of complications arising from their pregnancy (n = 10). The attending cardiologists based their assessment on the women’s current cardiac findings, their functional capacity and a review of their past history and records, and their cardiac interventions, if any, whether surgical and/or by catheterisation. The women themselves also rated the severity of their heart condition which was compared with that made by their cardiologist. Women were excluded from the study if they were deemed by their clinicians as emotionally or physically too unwell to be interviewed, were not fluent in English or were intellectually handicapped. A written questionnaire recorded basic demographic information and included a list of the symptoms experienced. A semi-structured interview specifically constructed for this study and conducted by a single interviewer (K.N.), was recorded digitally and took approximately 30 minutes to complete. The interviews were carried out in person wherever possible and if not, via the telephone. The questionnaire focused on the women’s motivations for having a pregnancy and the effect of their perception and understanding of their CHD and its associated implications with respect to the pregnancy. Supportive prompts were used
Please cite this article in press as: Ngu K, et al. Case Studies of the Perceptions of Women with High Risk Congenital Heart Disease Successfully Completing a Pregnancy. Heart, Lung and Circulation (2014), http://dx.doi.org/10.1016/j. hlc.2014.03.019
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when participants indicated uncertainty about the questions asked, or to encourage the women to expand on their motivations, or perceptions and understanding of their heart defect. A thematic analysis was conducted of the interviews highlighting the women’s motivating factors for conceiving and their perceptions of the severity of their cardiac status. The women’s responses were reviewed in order to identify recurrent patterns and themes regarding their motivation for conceiving. After an initial reading the responses were reread and annotated with emergent themes which were then grouped into similar categories. The women’s responses were re-examined within the framework of the emergent themes and the final categories determined as is the standard practice for a thematic analysis of qualitative data. Saturation is normally reached by 20 which was the sample size of this study. Inter-rater reliability was determined via the following process. Four selected interview transcripts, two each from women with or without CHD that covered a wide range of themes were also coded by a colleague not involved with the study to compare with the coding done by the interviewer. The colleague had a 15 minute information session on the coding scheme before independently reading the transcripts and assigning codes as per the coding scheme. Next, the two coders compared results and discussed any differences. Informed consent was obtained from each participant and ethics approval was granted by the relevant hospital and university committees conforming to the ethical guidelines of the 1975 Declaration of Helsinki.
Results Clinicians’ Rating of CHD Severity Twenty women with CHD who had completed one or more successful pregnancies were recruited over a nine month period from August 2011 to march 2012. Their demographical details are noted in Table 1. One group of 10 women was considered by their attending cardiologist to have mild CHD (such as an atrial septal defect) with little or no haemodynamic consequences (Table 2). The second group comprised 10 women who their cardiologist considered to have moderate or a more severe residual or un-operated congenital heart abnormality at the time of the pregnancy (Table 3). Six women were classified as having ‘‘moderate’’ CHD (such as post-operative Fallot’s tetralogy with moderate to severe pulmonary incompetence), four women with moderate to severe CHD (such as a Fontan circulation for a univentricular heart from a double inlet left ventricle). Sixteen of the women had previous surgery for their CHD when they conceived. In the sample extracts there was a moderate level of agreement between the two coders (approximately 72%). Disagreement between the coders was resolved through discussion and agreement by both coders to changing one of the assigned codes by one of the coders (one instance) or by adding a needed code that was missing in the extracts (eight instances).
Table 1 Biographical Summary of the Study Sample.
Mean Age (years),
Women with
Women with
mild CHD
moderate to
(low risk)
severe CHD
n = 10
(high risk) n = 10
35.8 (5.9)
28.9 (3.5)
Standard Deviation Nationality/Ethnicity Australian Other Religion
8
9
2
1
Catholic
4
4
Other Christian
3
5
No religion
3
1
Married
6
5
Defacto
2
2
2
3
Marital Status
Single Employment status Employed
6
7
Unemployed
1
1
Volunteer Work
3
2
Education Tertiary
8
4
High School
2
5
-
1
Unknown Parity 1 Child
4
5
2 Children
4
3
3 Children
2
2
38.3
37.6
Normal Emergency Caesarean
6 0
2 2
Elective Caesarean
1
5
Forceps
2
1
Vacuum Extraction
0
0
Mean gestational age at Delivery (weeks) Mode of delivery
Unknown CHD in Children
1
-
2
0
CHD - congenital heart disease
Women’s Motivations, Perceptions and Risk Exposure Similar motivating factors appeared to have influenced both groups of women in their decision to proceed with a pregnancy (Table 4). Five major themes were elucidated from the interviews: (a) The influence of external (cultural, social and religious) expectations placed on women to have children (b) The influence of existing relationships from a partner, family and friends
Please cite this article in press as: Ngu K, et al. Case Studies of the Perceptions of Women with High Risk Congenital Heart Disease Successfully Completing a Pregnancy. Heart, Lung and Circulation (2014), http://dx.doi.org/10.1016/j. hlc.2014.03.019
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Table 2 Group 1 Mild CHD - Patients’ and Clinicians’ Understanding of the Patients’ Heart Abnormality. Patient’s diagnosis
Clinician’s diagnosis
Surgery
Patient’s
Clinician’s
prior to
perception of
assessment
pregnancy
their CHD
of patient’s
severity
CHD severity
Concordance
Pulmonary atresia VSD MAPCAs
Pulmonary atresia VSD MAPCAs
Yes
Mild
Mild
Yes
Hole in the heart
Moderately large ventricular septal
Yes
Mild
Mild
Yes
defect and patent foramen ovale/atrial septal defect Transposition of the great vessels
Transposition of the great vessels
Yes
Mild
Mild
Yes
Coarctation of aortic valve
Coarctation of aorta, mild aortic valve and subaortic stenosis
Yes
Mild
Mild
Yes
Bicuspid aortic valve and
Bicuspid aortic valve and coarctation
Yes
Mild
Mild
Yes Yes
coarctation of aorta
of aorta
Heart disorder
Ebstein’s anomaly of tricuspid valve
Yes
Mild
Mild
ASD
Atrial septal defect
No
Mild
Mild
Yes
VSD with mild aortic
VSD and mild aortic regurgitation
No
Mild
Mild
Yes
Tetralogy of Fallot’s Mitral valve dysplasia
Yes No
Mild Mild
Mild Mild
Yes Yes
incompetence Tetralogy fallot Mitral valve incompetence VSD - ventricular septal defect MAPCAs - major aortopulmonary collateral arteries ASD - atrial septal defect
Table 3 Group 2 Moderate to Severe CHD - Patients’ and Clinicians’ Understanding of the Partients’ Heart Abnormality. Patient’s diagnosis
Clinician’s diagnosis
Surgery
Patient’s
Clinician’s
prior to
perception of
assessment
pregnancy
their CHD
of patient’s
severity
CHD severity
Concordance
Heart murmur
Transposition of the great vessels
Yes
Mild
Moderate/severe
No
Congenital heart disease
Double inlet left ventricle
Yes
Mild
Moderate/severe
No
Heart condition
Transposition of the great vessels,
Yes
Mild
Moderate
No
ventricular septal defect, pulmonary stenosis Fallot’s tetralogy
Fallot’s tetralogy
Yes
Mild
Moderate
No
Hole in heart Aortic stenosis
Fallot’s tetralogy Aortic valve stenosis
Yes No
Mild Mild/
Moderate Moderate
No No
Transposition of the great vessels
Transposition of the great vessels
Yes
Mild
Moderate
No
Ventricular septal defect and
Aortic stenosis and closed
Yes
Moderate/
Severe
No
moderate
aortic stenosis
ventricular septal defect
severe
Subaortic stenosis
Subaortic stenosis
Yes
Mild
Moderate
No
5x open heart operations aortic
Double outlet right ventricle,
Yes
Mild
Severe
No
valve replacement x2
ventricular septal defect, transposition of great vessels and pulmonary stenosis
Please cite this article in press as: Ngu K, et al. Case Studies of the Perceptions of Women with High Risk Congenital Heart Disease Successfully Completing a Pregnancy. Heart, Lung and Circulation (2014), http://dx.doi.org/10.1016/j. hlc.2014.03.019
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Table 4 Motivations of Women with CHD Proceeding to Pregnancy. Themes Influence of existing relationships - Partner
Low risk CHD (n = 10)
High risk CHD (n = 10)
8
6
8
7
- Pregnancy as a personal goal and desired experience
7
8
- Financial stability
7
6
- Past experiences of motherhood and children
5
5
5 2
6 4
- Family and friends Personal Influences
Biological Influences - Basic biologic drive - Considerations of age and reproduction related changes Cultural and social influences
2
0
Termination of pregnancy not considered a viable option
1
4
(c) The women’s own personal goals and desired experiences in life (d) Presumed innate ‘‘biological’’ urges of the women and their inherent desires to bear children while being cognizant of the reproductive related changes as women aged (e) Where termination of pregnancy was not considered a viable option Both groups of women expressed concerns for their own health and that of their unborn child. Nine of the women in each group expressed concerns about the risks to themselves, including not surviving the pregnancy, and to their infant. Eight women, three from the low risk group and five from the high risk group, raised concerns about the possibility of their infant having a heart abnormality but only two had infants with CHD – a moderately large ventricular septal defect being missed on an earlier foetal echocardiogram while the second not having had a foetal echocardiogram, the mother being unaware that she had a significant atrial septal defect until after her infant was diagnosed as having aortic valve stenosis. She previously was told she had a murmur which was regarded as being innocent. The other 18 women had normal foetal cardiac scans which may have had a reassuring influence on them to continue with the pregnancy. Despite their concerns, the women, especially in the high risk group, generally placed a greater reliance on how they perceived and understood their heart condition rather than the severity as assessed ‘‘objectively’’ by their attending cardiologist. Factors that seemed to contribute to the women’s perception and understanding of their CHD were: (1) How well they had adapted and lived with their heart condition, including developing coping mechanisms of denial and ignorance (2) Their reliance on their clinicians to advise against a pregnancy if they deemed the health risks too great (3) Their knowledge and understanding of the nature of their condition
(4) Their past experiences of having lived with the heart defect for all the years before they fell pregnant Having successfully adapted to their heart defects they regarded themselves as being of low risk even when going through a pregnancy. Living with their CHD was specifically seen as a ‘‘normal’’ way of life by 50% of the women in the low risk group and even included 40% of women in the high risk group. Two women in the high and three women in the low risk groups appeared to have little knowledge of their heart defect, raising the question of whether they invoked a greater degree of denial with respect to the risks to themselves and their newborn infant. The women in both the low and high risk groups seemed to perceive their clinician as a benevolent paternal/maternal figure and assumed that they would be carefully monitored and supported throughout their pregnancy. The women in addition placed unrealistic expectations on what medical advances might achieve if any complications arose. All of the women in this study had some understanding of the maternal and foetal risks. The personal experience of the study sample having lived with the CHD was also a strong contributor to their perceptions of the anticipated risks associated with pregnancy. Six of the low risk group and three of the high risk women were little affected exercise-wise by their CHD and in turn felt that their CHD did not bar them from having children. However, one of the low risk group voiced negative living experiences arising from her heart defect, whereas three of the high-risk women described similar experiences. Women who had been limited by their CHD commented on the possibility of developing complications in the pregnancy. Nevertheless, these concerns did not prevent them from proceeding with the pregnancy once they received approval from their attending clinicians. Their strong desire to have a child, similar to those of healthy women, indicated that the drive for motherhood was stronger than the drive for self care.
Please cite this article in press as: Ngu K, et al. Case Studies of the Perceptions of Women with High Risk Congenital Heart Disease Successfully Completing a Pregnancy. Heart, Lung and Circulation (2014), http://dx.doi.org/10.1016/j. hlc.2014.03.019
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These observations are illustrated through a case vignette of a woman belonging to the high risk group as she described her pregnancy: ‘‘A.’’ was 25 years old when she conceived. She was born with a major cardiac heart abnormality, namely a double outlet right ventricle, subpulmonary ventricular septal defect with malposition of the great vessels and pulmonary stenosis. She underwent multiple surgeries, including an initial Senning inflow diversion and ventricular septal defect closure, subsequent pulmonary artery banding to ‘‘retrain’’ the left ventricle when she developed a failing right ventricle, followed by an arterial switch, debanding and the placement of a prosthetic valve at the neoaortic site after the neoaortic valve failed. She had a strong wish to have her own child. ‘‘I knew that one day when we got married, I always wanted to have children’’ as she ‘‘didn’t want to go through life and not try’’. However, during her pregnancy she developed gross dilatation of her neo-aortic root posing a major health risk to herself and her unborn infant. She was admitted for bed rest and commenced on a beta-blocker but despite monitoring of her subcutaneous heparin, she had an intrauterine bleed and required an urgent Caesarean section at 31 weeks gestation. Soon after the delivery and following a cardiac catheter, she had an aortic root and valve replacement [15]. Despite being told by her clinicians that she would have an increased risk of complications during her pregnancy she claimed, ‘‘I always knew the birth would not be as normal as everyone else’’. ‘‘A.’’ expressed a strong faith in and reliance on her managing team, as she was ‘‘confident with cardiologist and obstetrician as well, felt like I was in good hands’’. ‘‘A.’’ demonstrated a tendency to downplay and deny the severity and associated risks of her condition, ‘‘I didn’t tell a lot of people the risks, because I preferred not to talk about it’’. She described her condition as ‘‘5x open heart operations, aortic valve replacement x2’’ and rating it ‘‘mild’’ in severity. She based that on her having ‘‘no problems’’ participating in social activities and she ‘‘live[s] [a] normal life’’. Subsequent to her first pregnancy and despite the major complications, ‘‘A.’’ expressed a desire for additional children. After further discussion and evaluation by her clinicians, she ‘‘decided no more children to stay safe and healthy’’.
Discussion In this small sample, there did not appear to be a difference in the motivations and perceptions of women with clinically identified mild (low risk) as compared to moderate to severe (high risk) CHD who decided to, and had successfully completed a pregnancy. The women were all equally determined to proceed with their pregnancy and regarded their heart abnormalities whether mild or severe in a similar manner. Whilst further research with a larger sample is required, an emergent question from this study is do
women with more severe CHD have a greater tendency to deny and underestimate the severity and associated risks of their CHD? The women’s perception of their CHD generally did not reflect a thorough understanding of its clinical implications, prognosis and potential complications associated with a pregnancy. Our study sample seemed to adopt similar maladaptive coping mechanisms such as denial and normalisation, reducing psychological distress and as described in Claessens, sheltering them from experiencing or acknowledging the negative repercussions of their condition [16]. Of special interest, was that the women with high risk CHD still generally spoke of their condition in the same manner as women with less severe CHD. Both groups shared similar concerns regarding maternal and infant mortality and morbidity despite varied levels of knowledge and understanding of such outcomes. Such inaccuracies may be a manifestation of the women’s lack of knowledge about their CHD and awareness of the behaviours and activities that were potentially detrimental to their health, particularly as they entered adulthood [17–19]. This void in the knowledge of the potential health complications may lead to a distorted assessment of the risks to themselves and their children [20,21]. Others have also discussed patients with CHD holding false beliefs and assumptions regarding their CHD [22,23]. Importantly, the women demonstrated a strong faith in the abilities of their clinician, including their cardiologist, and that there will (always) be appropriate medical interventions to ensure their wellbeing and that of their child’s. Their belief in, and reliance on their clinicians may be greater than their clinicians are aware of, placing a substantial responsibility on them. Women of childbearing age with CHD need to be well informed about the prognosis, implications and consequences of their heart condition and the impact of a pregnancy. At the same time it is imperative that clinicians readily address and inform their patients regarding these issues and provide sound advice when such a patient presents seeking a pregnancy. That becomes especially important for women with severe CHD where pregnancy and child birth is not a viable option. These women need to be identified early in their management to prepare them for these risks and the potential of not having children.
Study Limitations This study was of a relatively small sample size and only recruited women who had successfully completed a pregnancy. Although the questionnaire developed was not psychometrically validated as a scale, it was specifically constructed to gather qualitative data pertinent to the study drawing on relevant published literature. Future studies may wish to explore the perceptions of women with CHD who were advised against a pregnancy because of the severity of their cardiac status, who had unsuccessful pregnancies or who fell pregnant and were advised to terminate.
Please cite this article in press as: Ngu K, et al. Case Studies of the Perceptions of Women with High Risk Congenital Heart Disease Successfully Completing a Pregnancy. Heart, Lung and Circulation (2014), http://dx.doi.org/10.1016/j. hlc.2014.03.019
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Conclusions Women with moderate to severe (high risk) CHD had similar motivations for proceeding to pregnancy as women who were identified as having less severe CHD. Women with more severe CHD seemed to be equally, if not more, motivated to conceive and perceived the consequences of their CHD in a similar manner as those who were clinically identified as having mild CHD. This observation may imply that they may use greater denial and underestimation of the severity and potential risks associated with a pregnancy and their subsequent prognosis; thus they may harbour an unrealistic perception of their risk in pregnancy. However further research with a larger sample is required to accurately determine this important observation. It also implies that both the cardiologist and obstetrician caring for these patients are especially knowledgeable about the effects of the pregnancy on the CHD and the effects of the CHD on the pregnancy. Thus the onus is on the clinicians to thoroughly understand the prognosis, implications and consequences of their patients’ heart conditions and be able to provide sound advice when a patient considers the prospect of pregnancy and to ensure that these women have a realistic understanding of the risks to themselves and their newborn infant. While considerable effort is made to help parents understand what may be wrong with their infant’s and child’s heart, less attention has been paid to ensure such an education is a life long process for the affected adolescent and adult. They need to fully understand the nature of their cardiac abnormality and its implications. Such a process should begin early in adolescence, peak with transition to adult care with reinforcement at each follow-up visit. Hopefully such a proactive process may result in women with serious CHD acquiring a more realistic understanding of their cardiac status, discuss the need for contraception and may be less inclined to pursue a pregnancy which may put themselves and their newborn infant at risk.
Acknowledgements Dr Tiow-Hoe Goh and Ms Julie Dunn helped in the recruitment of the participants and collation of data. Dr Ray Wang reviewed and coded selected interviews. Prof Richard Harper kindly provided the Figure. There was no financial support for this study.
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