A “concerning doubling” in maternal deaths due to sudden unexpected death in epilepsy (SUDEP) was seen between 2016-18 compared to 2013-15, a new report has shown.
Mothers and Babies: Reducing Risk through Audits and Confidential Enquiries across the UK (MBRRACE-UK) published their report ‘Saving Lives, Improving Mothers’ Care 2020 this month. Of the 2.2 million women who gave birth over the two years, 547 women died during pregnancy or up to one year afterwards. The report found that generally, pregnancy remains very safe in the UK.
However, it said a “key focus” in this year’s report is the fact that the number of women with epilepsy dying during pregnancy or the year after pregnancy from SUDEP had doubled. According to the report, “in many instances, these deaths are linked to inadequate medications management for these women either before or during their pregnancy”.
The report stressed that when it comes to epilepsy and pregnancy, SUDEP needs to be discussed. It found that “most women with epilepsy who had died had clear risk factors for SUDEP, but had not had risk or prevention measures discussed with them”.
MBRRACE-UK advises that women have a pre-pregnancy discussion with their epilepsy team well before considering pregnancy, to agree a plan. The report stressed that women shouldn’t stop taking their epilepsy medicines when they become pregnant, but should instead discuss them with their epilepsy specialist team. The team can help women make the right choices for them.
The report suggests that women with epilepsy need to be aware of the risks of SUDEP and epilepsy and how they can be reduced. A free app called EpSMon (available at sudep.org/epsmon) can be used to help with this.
MBRRACE-UK is also calling on healthcare professionals to support women with epilepsy with their pregnancies as early as possible. Health professionals should check that conversations have been had about minimising SUDEP risk and about the valproate Pregnancy Prevention Programme, it says. They should use a standardised safety tool, such as the SUDEP and Seizure Safety Checklist (sudep.org/checklist). The report also highlights the importance of joined up working between different specialists in maternity and epilepsy services.
Philip Lee, Chief Executive at Epilepsy Action, said: “It is extremely concerning to hear of the findings of the MBRRACE report, which found that the number of women with epilepsy dying during, or after pregnancy has increased from 13 in 2013-15, to 22 in 2016-18.
“Women with epilepsy are having to navigate increasingly difficult decisions around having a baby, as we know only too well from historic issues surrounding sodium valproate and the recent review into the risks of other epilepsy medicines in pregnancy.
“The report shows the need for pre-conception counselling has never been more urgent, so women fully understand the risks around pregnancy and epilepsy-related death, and how to minimise them.
“We support the recommendations and urge healthcare professionals to work together to ensure issues are fully discussed and women are appropriately supported. Importantly, women must not stop taking their epilepsy medicines without talking to a healthcare professional first.”
The report has also found that outcomes also differ across different areas and ethnicities for women. Those who are from more deprived areas, and those of Asian, Black or Mixed ethnic groups are at a higher risk of dying in pregnancy. Heart disease remains the leading cause of death in pregnancy, followed by blood clots.
The full report from MBRRACE-UK is available online.