A small number of studies have looked at the challenges the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) can present in pregnancy, childbirth, and postnatal care, and yet there are currently no international guidelines.
The Ehlers-Danlos Society is supporting a team of international experts, led by Dr. Sally Pezaro, who are producing much-needed guidelines in this area.
Dr. Pezaro is an academic midwife based at Coventry University in the United Kingdom, a Fellow of the Royal College of Midwives (FRCM), and an editorial board member of the British Journal of Midwifery, Evidence-Based Midwifery, MIDIRS, and the International Journal of Childbirth. She is also the lead midwife for hedstogether, a project which has enabled many networking and awareness-raising activities, building up a team of people with a range of experiences to co-create tools in relation to childbearing, hEDS, and HSD.
Dr. Pezaro is leading the Pelvic Floor and Bladder Disorders Working Group along with many other expert members of The International Consortium on the Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders, to produce guidelines for the management of pregnancy, birth, and post-natal recovery in the context of hypermobile Ehlers-Danlos syndrome (hEDS), hypermobility spectrum disorders (HSD), and vascular Ehlers-Danlos syndrome (vEDS).
A range of experts is involved including obstetricians, gynecologists, nutritionists, midwives, geneticists, and physical therapists.
Research to identify the evidence for best practice guidance, and workshops to produce the guidelines are taking place throughout 2022 with the guidelines expected to be published in 2023.
Complications in hEDS, HSD, and vEDS
While clinical care considerations for hEDS and HSD through pregnancy, birth, and beyond have been published (Blagowidow, 2021; Pezaro et al, 2018, 2021), no uniform international guidelines for the management of hEDS and HSD during the prenatal (antenatal), intrapartum, and postnatal period exist.
People with hEDS and HSD may encounter pregnancy-related problems such as ineffective anesthetic, unusually fast labors and births, problematic bleeding, and/or poor wound healing.
Pregnant people with vEDS have an increased risk of pregnancy complications and mortality. Major complications can occur during pregnancy, labor, birth, and in the weeks and months following. Thus, close monitoring by specialists throughout pregnancy is essential for those with vEDS.
While this project will focus on developing two sets of guidelines (one for hEDS and HSD, and one for vEDS) it will also consider and include the other rare and ultra-rare types of EDS as they may have similar concerns and require similar management.
Dr. Pezaro and many other co-creators of this work will be present at both the 2022 Global Learning Conference in Arizona and the International Scientific Symposium on the Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders in Rome. You are invited to engage with the team as this project progresses. We will keep you up to date also. The best is yet to come.
“I am immensely proud to be leading the International Consortium on EDS and HSD, in co-creating international consensus guidelines in relation to childbearing with hEDS, HSD, and vEDS. In pursuit of improving outcomes and experiences, I am keen to ensure that the best available evidence is used to inform both decision-making and practice in these areas.” Dr. Pezaro.
“Clinical guidelines highlight the concerns that can arise and the best ways to manage them. My hope is that these will help the healthcare community feel more confident about supporting people with EDS and HSD and promote a consistent and high quality of care that leads to better experiences for people with EDS and HSD and the healthcare professionals looking after them.” Dr. Alan Hakim, Director of Education, The Ehlers-Danlos Society.
Blagowidow, N. (2021, December). Obstetrics and gynecology in Ehlers‐Danlos syndrome: A brief review and update. In American Journal of Medical Genetics Part C: Seminars in Medical Genetics (Vol. 187, No. 4, pp. 593-598). Hoboken, USA: John Wiley & Sons, Inc.
Pezaro, S., Pearce, G., & Reinhold, E. (2021). A clinical update on hypermobile Ehlers-Danlos syndrome during pregnancy, birth, and beyond. British Journal of Midwifery, 29(9), 492-500.
Pezaro, S., Pearce, G., & Reinhold, E. (2018). Hypermobile Ehlers-Danlos syndrome during pregnancy, birth, and beyond. British Journal of Midwifery, 26(4), 217-223.