hEDS/HSD Maternity Survey Study

Project Summary

We carried out two online international surveys across UK, USA, Australia, Canada, New Zealand and Ireland. The first one was with 947 people with hEDS/HSD or an older version of those diagnoses. This totalled 1338 pregnancies. The second one was with 307 healthcare professionals providing any form of support over a person’s childbearing journey, whether antenatal, during birth or post partum.

Five third-party organisations (Royal College of Obstetricians and Gynaecologists, The Better Birth Network, Ehlers–Danlos Society, Hypermobility Syndromes Association and Ehlers–Danlos Support UK) were involved in the development of this project, as partners in the funding application and supported recruitment. 

This study aims were 3-fold:

1. to examine outcomes and complications in people childbearing with hEDS/HSD
2. to investigate maternity staff’s knowledge and confidence in supporting people with hEDS/HSD
3. to examine people with hEDS/HSD’s experiences of perinatal care

Outcomes and complications in people childbearing with hEDS/HSD

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.

Maternity staff’s knowledge and confidence in supporting people with hEDS/HSD and people with hEDS/HSD’s experiences of care

Two main qualitative themes were identified through thematic analysis: (1) a need for recognition of hEDS/HSD in perinatal care and (2) the delivery of appropriate individualised perinatal care. Quantitatively, people with hEDS/HSD perceived maternity professionals to have a low level of knowledge about the conditions. Respectively, maternity staff reported low levels of confidence in supporting people with hEDS/HSD.

Recommendations

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.

The co-created tools can be used to improve both education and practice in this field, and include an i-learn module hosted by the Royal College of Midwives, a tool for pregnancy notes, and an online video summarising hEDS/HSD and childbearing.