Background: Prenatal diagnosis of a major cardiac abnormality precipitates a crisis in the parents. To their grief and/or anger may be added the burden of whether to continue with the pregnancy if the fetus is previable.
Aims: We reviewed our counselling strategies to determine if the parents were satisfied with our approach and whether in their perception it provided the knowledge and understanding of the abnormality detected to help them in their decision.
Methods: Questionnaires highlighting parental perception of their experiences, were developed and sent to a cohort of parents following the birth of their infant or at least 6 months after termination. The parents were seen over 3 years in a private obstetric ultrasound practice, diagnosed with or specifically referred because of the diagnosis of a major heart abnormality in the fetus, confirmed at a subsequent scan with the paediatric cardiologist in attendance. Both clinicians explained the abnormality, 'working off each other'. The obstetrician ensured the explanations were in lay terms. Anatomical detail, while important to the clinicians, was not emphasised, but rather function, quality of life issues and probable outcome and attendant risks of intervention. An appointment with the cardiologist was offered as was the need/option for further scans.
Results: 39 patients were reviewed, 13 of whom elected to terminate their pregnancy. Of the 30 who responded, 70% reported that the explanations of the abnormality were clear to very clear, whilst 85% considered the detail given was 'just right'. Only 60% rated their understanding of the diagnosis as 'good to excellent', improving to 80% with subsequent scans. These results were especially meaningful when 70% of the respondents described themselves as being distressed or very distressed following the initial diagnosis.
Conclusions: These results suggest that parents seemed satisfied with our approach of two clinicians working together emphasising function and outcome, rather than anatomical detail. Their perceived understanding seemed to allow them to make their decision concerning continuation or termination of their pregnancy.