Arthrogryposis Multiplex Congenita (AMC) and counselling before and during pregnancy: a questionnaire study

BACKGROUND: Pre-pregnancy counselling in women with Arthrogryposis Multiplex Congenita (AMC) is not implemented as standard care. Prior surveys revealed that the majority of adults with AMC live independently with or without support, are working, and engage in social actifities. Although many of them underwent pregnancies, literature is scarce concerning women with AMC and pregnancies. This study enquires information of women with AMC and their preferences to optimize counselling and guidance concerning aspects related to (pre-)pregnancy, childbirth and parenthood. Women with AMC, being members of an international AMC patient support group or Canadian register, were invited anonymously via newsletter in mail or announcement on social media. RESULTS: A total of 53 women with confirmed AMC participated in this questionnaire study. Pregnancies were reported in 64.2% (34/53) of the women and 26 women had multiple pregnancies and delivered in total 45 children. A third (15/45) of the children were born vaginally and the remaining per caesarean section. None of the children had AMC. Four women reported on complications during application of local analgesia in labour and in 3 while positioning on the operating table. Of the 47 women who answered this question, 95.7% (45/47) expressed a wish for standard pre-pregnancy counselling. As optimal circumstances they prefer counselling at or above 18 years of age, by a gynaecologist, at the outpatient clinic and for those with a relationship together with their partner. The importance of multidisciplinary team of physicians was emphasized as well as information from peer support groups and websites. Women expressed concerns about lack of knowledge on AMC in healthcare workers, discontinuity in care and attitude towards treatment and acknowledged the importance of this study. CONCLUSIONS: This study provides unique insights from women with AMC regarding pregnancy and parenthood. Participants emphasized the importance of tailored care. Their preferences strongly advocate for implementing pre-pregnancy counselling from the age of 18, ideally by a multidisciplinary team including a gynecologist. Incorporating these perspectives is essential to improve reproductive care.