Prenatal Diagnosis of Hypoplastic Left Heart Syndrome: Impact of Counseling Patterns on Parental Perceptions and Decisions Regarding Termination of Pregnancy

Abstract

An online survey for parents of children with congenital heart disease (CHD) was developed to study parents' experiences at the time of diagnosis. The survey was distributed to online support groups. A total of 841 responses from parents of children with CHD were received during a 4-week period. The current study examined those respondents (211 [25 %]) who reported their child's diagnosis as hypoplastic left heart syndrome (HLHS). Among these, 138 (65 %) reported receiving the diagnosis prenatally. 32 % of those receiving a prenatal diagnosis reported that after they declined to terminate the pregnancy, termination was mentioned again by their physicians. Parents who had termination mentioned again after their initial decline reported significantly lower optimism regarding their child's life expectancy than those who did not have it mentioned again (66 vs. 94 %, p < 0.001); were more likely to interpret the term "rare" to mean "little or no chance of survival" (34 vs. 13 %, p = 0.01); and were more likely to change pediatric cardiologists (PCs) (43 vs. 12 %, p < 0.001). Similarly, 22 % of respondents receiving a prenatal diagnosis reported feeling pressure to terminate the pregnancy by the PC. Those who felt pressure to terminate reported lower optimism about their child's life expectancy than respondents who did not feel pressure (48 vs. 88 %, p < 0.001) and were more likely to choose a new PC (48 vs. 17 %, p < 0.001). In our cohort of parents, when termination of pregnancy was mentioned after the parents declined it, or if the parents felt pressure to terminate, the parents perceived a lower chance of survival, felt less optimistic about their child's life expectancy, and were more likely to choose another PC for long-term follow-up care. Our study could not determine whether repeated discussions of the possibility for termination of pregnancy independently impacts parental optimism regarding prognosis or whether those who counsel with repeated discussions of termination tend to have more guarded notions of the prognosis of children with HLHS. Further study is warranted to identify the implications of counseling patterns on parental perceptions and decisions regarding termination of pregnancy.

Associated genetic syndromes and extracardiac malformations strongly influence outcomes of fetuses with congenital heart diseases

“…Of course, liberal termination laws widely contribute to these contrasts. Yet, it is of particular note that the choice of TOP is sometimes influenced by the counselor's opinion [8,26,27], and obviously this variable cannot be evaluated. Furthermore, the approach to prenatal counseling is different in different countries and cultures.…”

11th Annual William J. Rashkind Memorial Lecture in paediatric cardiology – a short history of progress:Where we've been, where we are, where we're going

“…There are many theories as to why this is the case, but most believe that it is due to a slowing of the economy; this trend has been consistent since 2007 and continues to remain so at present. 31 However, in addition, the widespread application of foetal echocardiography has resulted in the pre-natal detection of complex congenital heart disease, resulting in elective terminations of pregnancy. The exact rates of pregnancy termination is difficult to ascertain in the literature; nonetheless, recent reports in the United States of America suggest termination rates as high as 40% for some complex lesions, 32, 33 and in European and Asian countries the termination rates may be even higher.…”

“Functionally” Univentricular Hearts: Impact of Pre-Natal Diagnosis

“…In fact it has been reported ( 3 , 8 , 16 , 53 , 59 , 60 , 64 , 66 , 67 , 69 , 70 , 73 ) that following the pre-natal diagnosis of complex congenital heart defect not suitable for bi-ventricular repair, the decision to terminate the pregnancy or for compassionate care has been taken with percentages varying from 8 ( 64 ) through 16 ( 8 , 16 ), 30 ( 59 , 60 ), 33 ( 3 ), up to 47% ( 73 ).…”