COUNSELING STRATEGIES FOR PARENTS OF INFANTS WITH CONGENITAL HEART-DISEASE

Congenital heart disease is a significant cause of morbidity and morta lity in the newborn. Its diagnosis may lead to a crisis in the affecte d families; there are the perceived implications of having an abnormal ity of so vital an organ. To that may be added the assumed guilt or bl ame, grief and at times anger, frequently experienced by parents of ab normal infants. It often befalls the paediatric cardiologist to initia te counselling while providing the expert information concerning the a bnormality and its optimum management. Such counselling differs from t hat needed for minor lesions as compared for more complex abnormalitie s where a fatal outcome may ensure. While it is important to provide a n accurate diagnosis and management plan to the parents, early detaile d information is often confusing and may not be assimilated at a time of great stress. The parents seem more concerned as to whether the inf ant will survive, what the long term outlook will be, whether he or sh e will attend school, play, work and so on. With the more severe cardi ac abnormalities, especially where there is a family history, one need be aware of the often perceived guilt of the parents. At times, it ma y be necessary to help the parents retain sufficient 'self-control', d elaying the grieving process to enable them to contribute to the decis ion making. Where the infant has died, a follow-up appointment can fac ilitate grieving and help deal with unresolved issues. Through skilled counselling, the cardiologist in addition to his/her diagnostic and m anagement skills, may meaningfully influence the ongoing care of the i nfant. They may help avoid the development of unrealistic fears or an over-optimistic outlook, thereby fostering the normal development of t he child.