A Coventry University researcher has led an international project to improve health outcomes for people who experience complications in pregnancy and childbirth due to hypermobility conditions.
Dr Sally Pezaro from the university’s Research Centre for Healthcare and Communities has spearheaded the co-creation of expert clinical guidance to help improve care and health practices with two types of hypermobility conditions – hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobility Spectrum Disorder (HSD).
hEDS affects connective tissue throughout the body and is characterised by overly flexible joints, stretchy skin and fragile tissues, while HSD includes a variety of joint and muscle symptoms similar to hEDS and broadly requires the same management.
Usually underdiagnosed, the conditions can increase the risk of injuries and complications during pregnancy, labour and birth, including joint pain, dislocations, unexpectedly rapid births, slow wound healing and increased bleeding. Dr Pezaro collaborated with a multidisciplinary team drawing from midwifery, obstetrics, medicine, rheumatology, dietetics, genetics and patients with first-hand experience from countries including the UK, US, Canada, France and the Netherlands.
The research aims to provide healthcare professionals, childbearing people and their families with a thoughtful, evidence-based roadmap to enhance care and health outcomes during pregnancy, birth and beyond.
The team address knowledge gaps and misconceptions related to hypermobility conditions and perinatal care, offering support and practical help for a smoother and more informed child -birthing experience.
The researchers first identified key areas for examination, such as pre-pregnancy screening, assessing pregnancy risks, exploring birth options and methods, managing post-birth recovery and addressing the overall care of individuals with hEDS/HSD in the childbearing context. This part of the project involved collaboration with the Ehlers Danlos Society’s International Consortium as well as input from patients and the public.
An in-depth review of existing literature on pregnancy, childbirth and postnatal recovery in individuals with hEDS/HSD followed, resulting in the development of new evidence-based clinical guidelines to support the various stages of a person’s childbearing journey.
The guidelines recommend: discussing potential complications and outcomes of hEDS/HSD in initial screening questionnaires for early consultation and monitoring; using long-lasting, dissolvable stitches when suitable to enhance healing; and providing physical therapy, bracing, support and assistive devices to help with functional activity.
Additionally, the guidelines advise people who are pregnant to be prepared for longer phases of latent labour followed by a potentially sudden, fast active labour and birth, which can happen outside of the expected birth location.
Dr Pezaro said: “This work marks a significant step forward in providing specialised care for people with hEDS/HSD during their childbearing journey. By offering these global evidence-based clinical guidelines, we aim to improve the quality of care and outcomes for these individuals, ensuring their specific needs are met with precision and compassion.”
Tools to assist in supportive decision making, information gathering and education on childbearing with hEDS/HSD can be downloaded via www.hEDSTogether.com.
