Family Planning Decisions after the Birth of a Cystic Fibrosis Child: The Impact of Prenatal Diagnosis

Abstract

A group of 105 randomly selected families of the Belgian CF Association was interviewed at home by a social worker to assess the impact of the birth of the CF child on further reproduction. The birth of a CF child had a major impact on further reproductive plans. In only 35% of the families that were followed up for at least 5 years did a subsequent pregnancy occur. It is important to stress, however, that for half of these the diagnosis of CF was not established at the beginning of this pregnancy. We paid specific attention to the factors influencing the decision-making concerning further pregnancies. The risk level, which was evaluated as high or even very high by most of the families, was a very important factor. The start of a new pregnancy within a given interval was also related to the kind of problems that were encountered with the CF child. It is very clear from our results that the availability of prenatal diagnosis will have a major effect on family planning. The decision to have a subsequent pregnancy will be facilitated (even stronger: when prenatal diagnosis is available, a pregnancy will be planned, and otherwise not). We also investigated the use of prenatal diagnosis in all parents who did not undergo a sterilization: 85% of these parents had the intention to use prenatal diagnosis should pregnancy occur. The intended use of prenatal diagnosis is related to the subjective interpretation of the risk level. A preliminary analysis of the answers to a recently mailed questionnaire confirms the main results and reveals that there is a clear need for additional information about first-trimester diagnosis of CF with DNA probes.

Key Words:

• Cystic fibrosis
• family planning
• follow-up study
• prenatal diagnosis