Background and aims: The fetal diagnosis of complex congenital heart disease (CHD) leads to a crisis for the affected couple. How much more so when a decision is made to terminate the pregnancy? In making that decision do the parents understand the anomaly, its consequences and possible outcome and does that information influence their decision process?
Methods and subjects: Questionnaires were developed. They were forwarded to parents seen in a private obstetric ultrasound practice, diagnosed with, or specifically referred, because of the diagnosis of a complex cardiac anomaly in the fetus. The diagnosis was subsequently confirmed by ultrasound examination in the presence of a paediatric cardiologist, in all but one patient. Once confirmed, both the obstetric ultrasonologist and cardiologist explained the anomaly, both working off each other, the obstetrician acting as the parent's advocate, asking and "demanding" explanations in lay terms, clarifying the nature of the anomaly, its possible consequences in the newborn and childhood, the need for intervention, and the short- and long-term risks, concentrating on quality of life issues. The parents were given the opportunity to meet with the cardiologist separately to clarify the diagnosis and management, before coming to a final decision to continue or terminate the pregnancy.
Results: Over a 3-year period, 40 such patients were included in the study, of which 13 opted for termination. The anomalies were complex and included hypoplastic left heart syndrome, univentricular heart and atrioventricular septal defect. The three autopsies carried out confirmed the prenatal diagnosis. Completed questionnaires were received from nine couples, two being lost to follow up and two refusing to complete the questionnaire despite telephone contact. All nine responses stated the explanation given was "very clear" or "clear", the detail covered was "just right", and their understanding of the diagnosis was "good " to "excellent". Eight stated they were very distressed following the diagnosis, and seven experienced great difficulty in arriving at a decision. In contrast, two stated that the decision was "easy" or "very easy". The reasons for termination included concern for the welfare of the affected child, other siblings in the family and because of the distress of the parents themselves. Intellectual disability was given as an additional reason in the three who had associated chromosomal abnormalities.
Conclusions: Although the numbers were small, it would appear that the above approach used by an obstetric ultrasonologist and cardiologist, working together, explaining complex congenital heart disease in lay terms and focusing on the need for intervention, functional outcome and quality of life issues, provided the parents with a reasonable understanding of the anomaly. Nevertheless, the decision to terminate, very difficult for nearly all the couples, seemed to be based on the perceived distress of the affected infant/child, the siblings and parents themselves. While three couples were grateful for an opportunity to respond, two refused, suggesting the need for more detailed follow up and support for those parents who decide to terminate an apparently wanted pregnancy.