A child with cystic fibrosis: II. Subsequent family planning decisions, reproduction and use of prenatal diagnosis

Abstract

In 1984, we interviewed 105 Belgian families with a Cystic Fibrosis (CF) child in order to assess the impact of the birth of their CF-child on subsequent family planning and to evaluate their attitudes towards prenatal diagnosis. Three years later, in 1987, they received a mailed questionnaire for an updating of the reproduction data and to assess their knowledge and intentions with regard to the new possibilities of DNA diagnosis. The birth of a CF-child had a major impact upon subsequent family planning. This effect was found both in the reproductive plans reported by the parents and in the occurrence of pregnancies during the follow-up interval. This effect can be attributed mostly to the recurrence risk and consists of postponing pregnancies as well as of deciding against further offspring. If the CF-child was the firstborn, the chance of having another child was greater than if there was already a healthy child before the birth of the CF-child. Nevertheless, only 47% of the families in which the CF-child was the firstborn, and who could be followed for an average period of 7 years, had another pregnancy. A large majority of families intended to use prenatal diagnosis should a pregnancy occur. In half of the pregnancies that occurred between 1984 and 1987, a prenatal diagnosis was performed. On the other hand, there is less consensus about pregnancy interruption should prenatal diagnosis reveal an affected fetus. In both 1984 and in 1987, more than half of the parents thought they would decide to have an interruption, but it is worth noting that a considerable proportion of interviewees could not make up their mind or were against it. It is also striking that one-third of the group held a different opinion in 1984 as compared to 1987.