Caring for pregnant women with Ehlers-Danlos Syndromes

By Julie Griffiths on 05 April 2018 Ehlers-Danlos Syndromes Research

Maternity care for pregnant women with Ehlers-Danlos Syndromes (EDS) ‘must improve’, say researchers.

A study by academics at Coventry University has found a lack of awareness among midwives and health professionals of the conditions and risks that women with EDS face during pregnancy and birth.

EDS are a group of inherited conditions that affect connective tissues in skin, joints, blood vessels and internal organs.

They can result in symptoms including hypermobility, stretchy skin and fragile skin that breaks or bruises easily.

Risks for pregnant women include premature or rapid labour, problems with anaesthesia, bleeding, tears during birth, heart problems, unstable joints and poor healing.

The study is the first review to draw on the current evidence and research into the condition and use this to explore midwifery care concerns, given that there are no guidelines for the management of pregnancy and labour for women with EDS.

The study’s authors said midwives have an ‘important role’ to play in a multidisciplinary approach to caring for women with EDS by providing routine care, identifying and reducing risk, making swift referrals where appropriate, supporting individualised care and educating colleagues, pregnant women and the wider public.

They added that identifying the diagnosis before giving birth should enable the most appropriate decision-making in collaboration with women and their families.

Better guidelines relating to the condition would also give an opportunity for health professionals to understand, raise awareness, and more effectively support undiagnosed pregnant women and those suspected of having the condition, as well as those who already have a diagnosis.

Lead researcher Dr Sally Pezaro said: ‘Complications associated with EDS during pregnancy and birth can be significant. A midwife’s awareness of the condition and its impact upon pregnancy can not only instigate more timely and appropriate referrals but also improve the quality of any professional advice given.

‘There are currently no guidelines for caring for or treating childbearing women with the condition. We feel improvements are needed to make sure women have access to maternity care plans that don’t just involve midwives, but also obstetricians, anaesthetists and GPs.

‘Midwives have an important role to play in this team approach to caring for pregnant women who have EDS to ensure that the birth of their child is an amazing moment in their lives and to reduce the risk of potential complications.’

It has been estimated that at least one or two people in 100 have EDS, but that only one in 20 people with the syndromes have been diagnosed.

The research has been published in the British Journal of Midwifery and is available here.