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Childbearing with Hypermobile Ehlers–Danlos Syndrome and Hypermobility Spectrum Disorders: A Large International Survey of Outcomes and Complications

Author

Listed:
  • Gemma Pearce

    (Research Centre for Healthcare and Communities, Coventry University, Coventry CV1 5FB, UK)

  • Lauren Bell

    (Research Centre for Healthcare and Communities, Coventry University, Coventry CV1 5FB, UK
    Coventry City Council, Coventry CV1 2GN, UK)

  • Sally Pezaro

    (Research Centre for Healthcare and Communities, Coventry University, Coventry CV1 5FB, UK)

  • Emma Reinhold

    (Patient and Public Involvement and Medical Advisor, Coventry University, Coventry CV1 5FB, UK)

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.

Suggested Citation

  • Gemma Pearce & Lauren Bell & Sally Pezaro & Emma Reinhold, 2023. "Childbearing with Hypermobile Ehlers–Danlos Syndrome and Hypermobility Spectrum Disorders: A Large International Survey of Outcomes and Complications," IJERPH, MDPI, vol. 20(20), pages 1-15, October.
    • Handle: RePEc:gam:jijerp:v:20:y:2023:i:20:p:6957-:d:1264635
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    References listed on IDEAS

    as
    1. Mojtaba Vaismoradi & Hannele Turunen & Terese Bondas, 2013. "Content analysis and thematic analysis: Implications for conducting a qualitative descriptive study," Nursing & Health Sciences, John Wiley & Sons, vol. 15(3), pages 398-405, September.
    2. Gemma Pearce & Lauren Bell & Paul Magee & Sally Pezaro, 2023. "Co-Created Solutions for Perinatal Professionals and Childbearing Needs for People with Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders," IJERPH, MDPI, vol. 20(20), pages 1-16, October.
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    1. Gemma Pearce & Lauren Bell & Paul Magee & Sally Pezaro, 2023. "Co-Created Solutions for Perinatal Professionals and Childbearing Needs for People with Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders," IJERPH, MDPI, vol. 20(20), pages 1-16, October.

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