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Research finds maternal deaths from epilepsy have increased over the last 30 years and SUDEP Action opens the debate: why?

Women with epilepsy overwhelmingly have healthy babies but research published this month reports an increasing trend in maternal deaths from epilepsy over the last 30 years.

Earlier research this year estimated that 1:1000 women die each year from epilepsy during or shortly after pregnancy and that epilepsy-related mortality appears to be a significant risk (Nashef 2014). 

The team from Nottingham University Hospitals NHS Trust who published the paper this month conducted a retrospective review of confidential enquiry into maternal death reports (1979–2008) encompassing 21,514,457 maternities.
The research found 92 maternal deaths from epilepsy over this period. The total proportion of maternal deaths from epilepsy over 30 years was 3.7% and showed an increasing trend. Sudden Unexpected Death in Epilepsy (SUDEP) was the single greatest cause of maternal deaths from epilepsy over this period followed by aspiration during seizures and drowning during bathing.  

The research does not answer why there has been an increase and opens an important debate. SUDEP was not defined until 1997 and before this a myth existed that people did not die from seizures. SUDEP Action led a government funded and high-profile national report into epilepsy deaths in 2002 and new guidelines on reporting of deaths were introduced in 2003. Awareness of epilepsy-mortality has continued to rise.

Jane Hanna, SUDEP Action said: “Improved reporting of epilepsy deaths is likely to explain the rise, but we need to continue to carefully monitor these deaths through the confidential enquiries and The Epilepsy Deaths Register. We are aware from bereaved families quite how traumatic these deaths are and the urgent and deep need to prevent these deaths. We need the lessons from this research and other reports in the last 15 years to be put into practice

The research team commented: "This research shows that women with epilepsy continue to have a risk of SUDEP in pregnancy and emphasises the importance of keeping epilepsy under good control to reduce this risk. Women can be understandably anxious about continuing Anti-Epilepsy Drugs in pregnancy because of the risks to the baby but it is paramount that decisions about changes in medication only take place after informed discussion with specialist obstetricians and neurology teams"

Lessons from other reports and research to date have highlighted:  

•    Pre-conception counselling for women of child-bearing age
•    Specialist obstetric care with neurology input neurological teams in pregnancy to improve maternal and fetal outcomes. 
•    Special care of medicines during pregnancy including regular checks of lamotrigine levels during pregnancy 
•    Essential information to women to include risks of seizures
•    A review of maternal deaths in women with epilepsy by Dr Lina Nashef will be published on 5th December on (SUDEP Action; SUDEP Aware, Epilepsy Australia partnership making sense of science in the real world)

Article  Kappoor D and Wallace S Trends in maternal deaths from epilepsy in the United Kingdom: a 30-year retrospective review. Obstet Med December 2014; Vol 7: 4 pp 160-164

Study calls for action to reduce maternal deaths