An international study published in December 2022 analysed the pregnancy and childbirth experiences of women with neuromuscular diseases, collected via online questionnaires:
- 721 pregnancies were reported by 305 women;
- 26 neuromuscular diseases were involved, with 50% limb-girdle muscular dystrophy and 42% FSH;
- 21% of pregnancies were terminated by miscarriage and 8% were terminated voluntarily;
- Of the pregnancies carried to term, 38% resulted in a caesarean section and 19% in assisted vaginal delivery, significantly higher averages than in the general population;
- Deterioration in muscle strength was recorded in 43% of pregnancies, a significantly higher risk in women who were symptomatic at the beginning of their pregnancy,
- After delivery, 23% of the women reported never having regained their previous health status;
- In contrast, the majority of participants had recovered completely after 3 months, including 75% of women who had lost their walking ability before pregnancy,
- Although breastfeeding was possible (sometimes with technical aids) for the 52% of women who had considered it, 1 woman out of 5 had to give it up (fatigue, pain, lack of milk, etc.).
The authors recommend considering perinatal follow-up, a specialised obstetric assessment and an occupational therapy consultation before and after the birth.