Lessons to be learned from maternal deaths report

A report released two weeks ago looked at the data behind over 500 women who died during or up to a year following pregnancy in the UK and Ireland in 2019-2021, from causes including epilepsy.

Seventeen of the women featured in MBRRACE-UK’s Saving Lives, Improving Mothers’ Care 2023 report died from causes related to epilepsy, and 14 of these deaths were due to Sudden Death in Epilepsy (SUDEP).  The rate of deaths attributed to epilepsy is not statistically significantly higher than in 2016-18, but the number that were classified as SUDEP is nearly double the 2013-2015 rate.

The researchers highlight that the period that saw the rise in deaths due to SUDEP was also a time of significant changes to the prescribing practice for the anti-seizure drug sodium valproate.  Guidance introduced in 2018 recommends that it should no longer be prescribed to women and girls of childbearing age, unless they are on a pregnancy prevention programme (sometimes called PREVENT). This is because of the risk of birth defects and developmental disorders for an unborn baby.  None of the women who died in this period were taking sodium valproate.

Another common theme in this and previous reports was around adherence to medication, as in some of the cases it was not clear whether the women who died were taking their anti-seizure medicines at the correct dose or at all.  A new recommendation was made for developing training resources to aid decision making on medication use in pregnancy, including information on the risks and benefits of specific medications and non-adherence.

The researchers also noted that there were lessons to be learned around gaps in care pathways in some cases, and recommended that women at particular risk of epilepsy-related death should have specialist or neurologist involvement at an early stage in pregnancy and multidisciplinary support throughout.

Responding to the report, Nicola Swanborough, Head of External Affairs at the Epilepsy Society, said:

“The tragic cases detailed in this report highlight the significant challenges faced by women with epilepsy when planning a pregnancy. It is vital that women are equipped with clear and accurate information, adequately supported and are front and centre in any decision making about their care. That includes outlining the risks and benefits of different medications and non-adherence, and ensuring a joined-up approach with regular input from specialists throughout pregnancy and in the postnatal period.

“For some women, valproate may be the only medication that will control their seizures. If they are then switched to an alternative safer medication which may not be as effective for them, it is vital that they have an enhanced care path, whether they are planning a pregnancy or not.

“The findings of the report underline the need for urgent research into the risks around all anti-seizure medications so that every woman can be prescribed the drug which is safest both for her and her baby. This will only happen with the right investment and it needs to happen now. Our Safe Mum, Safe Baby campaign is asking for £20m for this research, money which could safeguard women and stop babies from being born with preventable disabilities.”

IMPORTANT: You should never stop taking your medication without first consulting your doctor. To do so could leave you at risk of seizures.