Effective counselling of pre-natal diagnosis of serious heart disease--an aid to maternal bonding?

UNLABELLED: The pre-natal diagnosis of a serious anomaly in the fetus precipitates a crisis for the parents. Effective counselling may help during this difficult phase. We postulated that if parents opted to continue with the pregnancy, then they are better prepared to care for the newborn infant having already experienced the grieving process.
OBJECTIVES: This paper reviews our early experience, focusing on the parental perception of the counselling. METHODS AND
SUBJECTS: Questionnaires were developed and forwarded to patients previously seen in a private obstetric ultrasound practice, diagnosed with or specifically referred because of the diagnosis of a complex cardiac abnormality in the fetus. The diagnosis was subsequently confirmed by a further scan in the presence of a paediatric cardiologist, who initiated explanation of the anomaly with the obstetrician ultrasonologist asking and seeking explanations in lay terms on behalf of the parents, concerning the nature of the anomaly, its possible consequences, the need for intervention, the short- and long-term risks, concentrating on quality of life issues.
RESULTS: Over a 3-year period a cohort of 40 such patients were reviewed of whom a third opted for termination. The anomalies were complex and many life-threatening, most requiring surgical intervention in the newborn period or subsequently. Of the 27 that proceeded to term, responses were obtained from 21. Most described the shock at learning the diagnosis and of being very distressed at the time. Most commented that the information provided was 'just right'. The majority felt that the previous contact with the obstetrician and cardiologist was very helpful in their subsequent care of their newborn infant. Three parents noted that they continued to experience anxiety about their baby, while 3 others indicated that the previous counselling had 'no effect' on the handling of their baby. Anecdotal observations made of the parents especially of the mother's handling of the newborn infant seemed to support the parents' perception that they were helped by their prior knowledge of the diagnosis.
CONCLUSION: With increasing pre-natal diagnosis of major anomalies, it is important that parents so affected have the opportunity to understand the nature of the abnormality, its significance and effects on the infant's and child's functioning and survival, and the need for intervention. Such information together with working through the grieving process during the latter part of the pregnancy may help with the handling of the infant once born and further improve their bonding with their baby, despite the need for, at times, life-threatening intervention. Further objective studies are required to confirm these preliminary observations. 2004 S. Karger AG, Basel.