Reproductive choices of women in families with haemophilia

To assess women's experiences in pregnancy and attitudes towards their repr oductive choices, a structured questionnaire was sent to all obligate and p otential carriers of haemophilia (A and B), aged 14-60 years, registered wi th our haemophilia centre. One hundred and ninety-seven of 545 (36%) return ed completed questionnaires. Clinical details, including type and severity of the disease in the family and results of DNA analysis for carrier detect ion, were obtained from patient notes. One hundred and sixty women had been pregnant at least once, of whom 36 (23%) had received a prenatal diagnosti c test. Of the 41 women who had pregnancy terminations, haemophilia was the main reason in only 11 (27%) women. This decision was affected by the woma n's religion and results of DNA studies. Living close to a haemophilia cent re, proper counselling at the centre and awareness of the availability of p renatal diagnostic tests influenced the women's decision to become pregnant in 14% and 10% of; first and subsequent pregnancies, respectively. These f actors were considered more frequently in women with severe haemophilia in the family (P = 0.002) and in confirmed carriers of haemophilia (P = 0.04). When women made a conscious decision not to have children, the reasons wer e fear of passing haemophilia onto their child (44%), previous experience w ith haemophilia (6%) and the stress of going through prenatal tests (7%). S everity of the disease in the family, haemophilia diagnosis, results of DNA studies, religion and year of birth had no effect on this decision. Our da ta indicate that haemophilia and related factors in the family have an infl uence on women's reproductive choices.