Childbearing with Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders: A large International Survey of Outcomes and complications

Gemma Pearce, Lauren Bell, Sally Pezaro, Emma J Reinhold

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2 Citations (Scopus)
51 Downloads (Pure)

Abstract

One in 20 births could be affected by hypermobile Ehlers–Danlos syndrome or Hypermobility Spectrum Disorders (hEDS/HSD); however, these are under-diagnosed and lacking research. This study aimed to examine outcomes and complications in people childbearing with hEDS/HSD. A large online international survey was completed by women with experience in childbearing and a diagnosis of hEDS/HSD (N = 947, total pregnancies = 1338). Data were collected on demographics, pregnancy and birth outcomes and complications. Participants reported pregnancies in the UK (N = 771), USA (N = 364), Australia (N = 106), Canada (N = 60), New Zealand (N = 23) and Ireland (N = 14). Incidences were higher in people with hEDS/HSD than typically found in the general population for pre-eclampsia, eclampsia, pre-term rupture of membranes, pre-term birth, antepartum haemorrhage, postpartum haemorrhage, hyperemesis gravidarum, shoulder dystocia, caesarean wound infection, postpartum psychosis, post-traumatic stress disorder, precipitate labour and being born before arrival at place of birth. This potential for increased risk related to maternal and neonatal outcomes and complications highlights the importance of diagnosis and appropriate care considerations for childbearing people with hEDS/HSD. Recommendations include updating healthcare guidance to include awareness of these possible complications and outcomes and including hEDS/HSD in initial screening questionnaires of perinatal care to ensure appropriate consultation and monitoring can take place from the start.
Original languageEnglish
Article number6957
Number of pages15
JournalInternational Journal of Environmental Research and Public Health
Volume20
Issue number20
DOIs
Publication statusPublished - 21 Oct 2023

Bibliographical note

This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/

Funder

This research was funded by the Coventry University “Enterprise, Exchange and Engagement” internal pump priming grant.

Keywords

  • hypermobility
  • Ehlers–Danlos
  • pregnancy
  • birth
  • maternity
  • incidence
  • women’s health and wellbeing
  • labour
  • Mast Cell Activation syndrome (MCAS)
  • premature birth

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