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Midwives have key role to play in improving care for patients with inherited syndromes

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Maternity care for pregnant women with a set of rare inherited conditions called Ehlers-Danlos syndromes “must improve”, according to UK midwifery researchers.

They warned there was a lack of awareness among midwives and health professionals of the conditions and the number of risks that women with them face during pregnancy and birth.

“Complications associated with Ehlers-Danlos syndromes during pregnancy and birth can be significant”

Sally Pezaro

The researchers, from Coventry University, said they were concerned that this could lead to delayed access to appropriate care – and have serious consequences for pregnant women and their babies.

Ehlers-Danlos syndromes 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.

It has been estimated that at least one or two people in 100 have Ehlers-Danlos syndromes, but that only one in 20 people with them have been diagnosed, noted the researchers.

They highlighted that the group of conditions could cause health problems for women during birth and for their newborn babies.

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

The Coventry study, published in the British Journal of Midwifery, is the first review to draw on the current evidence and research into the condition and use this to explore midwifery care concerns.

It highlighted, for example, that there were currently no guidelines for the management of pregnancy and labour for women with Ehlers-Danlos syndromes.

“Midwives have an important role to play in this team approach to caring for pregnant women”

Sally Pezaro

As a result, the researchers stressed that midwives must work in partnership with obstetricians, anaesthetists and GPs to ensure women achieved the most appropriate care plans.

They stated that midwives had an “important role” to play in such a multi-disciplinary approach to caring for women with Ehlers-Danlos syndromes.

Midwives could do this by providing routine care, identifying and reducing risk, making swift referrals where needed, supporting individual care and educating colleagues, said the researchers.

They added that, as midwives had regular contact with women during pregnancy, they may be ideally placed to raise the possibility of Ehlers-Danlos syndromes in undiagnosed patients.

Identifying the diagnosis before giving birth should enable the most appropriate decision-making in collaboration with women and their families, the researchers said.

Meanwhile, they suggested that better guidelines would also give midwives an opportunity to more effectively support undiagnosed pregnant women and those suspected of having the condition, as well as those already diagnosed.

Lead study author Dr Sally Pezaro, a midwife at the university’s school of nursing and midwifery, said: “Complications associated with Ehlers-Danlos syndromes during pregnancy and birth can be significant.

University of Coventry

Dr Sally Pezaro

Sally Pezaro

“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,” she said.

She added: “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 Ehlers-Danlos syndromes to ensure that the birth of their child is an amazing moment in their lives and reduce the risk of potential complications,” she said.

Dr Pezaro worked on the research paper with colleagues Dr Gemma Pearce, from the university, and Dr Emma Reinhold, a primary care advisor for the charity Ehlers-Danlos Support UK.

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