Pregnancy and neuromuscular diseases: survey results from 300 women

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.

 

Moore U, Emmons SS, Rufibach L, Straub V, Diaz-Manera J, Guglieri M. Patient reported pregnancy and birth outcomes in genetic neuromuscular diseases. Neuromuscul Disord. 2023 Mar;33(3):241-249. doi: 10.1016/j.nmd.2022.12.013. Epub 2022 Dec 27. PMID: 36753800.