A clinical update on hypermobile Ehlers-Danlos syndrome during pregnancy, birth and beyond

Abstract

New estimates suggest that cases of hypermobile Ehlers-Danlos syndrome (hEDS) along with the related hypermobility spectrum disorders (HSD) affect approximately 1 in 20 pregnancies globally per year. As such, cases in maternity services should no longer be considered rare, only rarely diagnosed. These conditions can impact upon childbearing in different ways, yet healthcare professionals are often perceived to be lacking in awareness. This article updates and builds upon a previous international review of maternity care considerations for those childbearing with hEDS/HSD. Findings point to a need for individualised care planning in partnership with parents as part of a multidisciplinary approach. As our knowledge of these conditions has developed significantly in recent years, new research insights could usefully be embedded in staff and student education. As a first step, www.hEDSTogether.com has been launched hosting a freely downloadable EDS Maternity tool for use in practice, along with an i-learn module hosted by the Royal College of Midwives.