The psychosocial adjustment of children with major congenital abdominal anomalies

The confrontation with the birth of a child with a congenital anomaly is enormously stressful for parents. Expectations of a healthy baby and a joyfhlnursery time are often not met. These parents will have multiple questions and concents which can be centered around the past, the present, and the future. Looking back, they may ask themselves: What has gone wrong that our child has a congenital anomaly? What have we done or not done that this has happened? In most cases these questions crumot be answered, because no specific cause of the anomaly can be identified. This often leaves parents with much uncertainty, which will not easily be resolved. At the same time, they will have to accept the situation as it is, and face the responsibility to care for this child. This presents the parents with the actual task of caring for and attaching to their newbom child. However, these children must be hospitalized, often in a neonatal pediatric surgery intensive care unit during a considerable time, which aggravates the difficulties for the parents. The unit in itself may provoke anxiety in the parents. They find themselves in a completely unfamiliar situation of which they do not know the rules and what is expected ofthem. They see their child surrounded by high-tech instruments on a ward with many busy doctors and nurses. The child will be undergoing many more or less invasive and painful procedures, and it may be very difficult for parents to see tlus happen, wlule they have very few tools to comfort or help the child. The medical situation of a child with a major congelutal abdominal anomaly will be critical for a shorter Of longer period. For parents this is a situation which provokes CllOlTIlOUS anxieties. All a consequence they may have difficulty to attach themselves to their child until the medical situation has been stabilized. If a child with a major congenital abdominal anomaly has survived these first months, concerns about the future may arise. Parents will raise questions about what will become of their child. Will it grow up to be a normal child? Will it be handicapped? In what ways will the life of their child be affected by the anomaly or the treatment? These questions are often very difficult to answer for a particular child, and answers based on group findings may be unsatisfying for parents and may not take away their uncertainties.