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MBRRACE Maternal Deaths Inquiry 2020

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MBRRACE Maternal Deaths Inquiry (2020)
Showing a doubling of epilepsy deaths among pregnant women with epilepsy

 

The 2020 MBRRACE (Mothers and Babies: Reducing Risk through Audits and Confidential Enquiries in UK) report has found that the number of maternal deaths of women with epilepsy has doubled in three years, during 2016 to 2018. The national inquiry investigated the maternal deaths of 547 women, who died up to one year after pregnancy, in a bid to improve the safety and care of pregnant women.

Key report findings:

  • Twice as many women with epilepsy (twenty-two) died during or up to a year after the end of pregnancy (UK & Ireland) in 2016-18 from causes related to epilepsy, compared to 13 women in 2013-15
  • SUDEP was the main cause of death for these women (15), though 2 drowned and 2 died due to status epilepticus (prolonged seizures). Exact cause of death was not available for 3 women though they were known to have epilepsy
  • 4 women were not taking epilepsy medications and very few women had documented pre-pregnancy counselling 
  • The majority had uncontrolled epilepsy pre-pregnancy, less than half had specialist review during pregnancy

A key focus for this report is epilepsy and Sudden Unexpected Death in EPilepsy (SUDEP) which ‘occurred almost twice as often among women who were pregnant, or in the year after pregnancy’. It also discovered that “most women who died had clear risk factors for SUDEP but had not had risk or prevention measures discussed with them.                                          Pregnancy

Report recommendations:

Women with epilepsy should:

  • have a pre-pregnancy discussion with their epilepsy team and agree a plan if thinking about pregnancy
  • not stop taking their epilepsy medications but discuss them with their epilepsy teams (and maternity team if pregnant)
  • Be aware of epilepsy and SUDEP risks and how you can reduce them – the free EpSMon app can help you with this (www.sudep.org/epsmon)

Clinicians should:

  • Check that there has been a positive conversation about minimising epilepsy risks and SUDEP (alongside the Pregnancy Prevention Programme)
  • Use standardised safety tools to check discussion of medication changes are informed and balanced; the SUDEP and Seizure Safety Checklist can support this (https://sudep.org/checklist)
  • Work across maternity and epilepsy services to make sure women are well supported during and after pregnancy
     

PDF icon MBRRACE Maternal Deaths Report (2020)


PDF icon MBRRACE Report (2020) Summary
 

File MBRRACE Report (2020) Presentation


Read more about this report here
Further information about epilepsy risks
For the free epilepsy maternity toolkit & other useful information for women with epilepsy (particularly if pregnant) see here