Women with epilepsy – keeping them safe in pregnancy and why discussing risks and maternal deaths is vital

For over 15 years, SUDEP Action has been raising the issue of maternal deaths, and the increased risks faced during pregnancy for women with epilepsy, with policy makers; drawing attention to previous confidential enquiries into maternal deaths and supporting families in the aftermath. It is estimated that women with epilepsy are at a 10 fold-increased risk of death during this time. An estimated 1 in 1000 women died from epilepsy (mostly SUDEP) during or shortly after pregnancy (Nashef, 2014). 

While this may be alarming for expectant mums to hear, it is important that pregnant women with epilepsy have conversations about risk with their epilepsy specialist, so they can make informed choices for both their baby, and importantly regarding their own safety. Pregnancy and being a new mum impacts on epilepsy in a range of ways, affecting medication absorption, changes to seizure frequency, stress, tiredness...; so a holistic approach to risk & seizure management, involving all specialists, as well as primary care clinicians, where the women is fully involved in all decisions and options is important. All women and girls of childbearing age should receive pre-conception counselling prior to this, providing essential information about risks and the steps to take to keep them safer if pregnancy happens, as part of their yearly review (even if they are not currently planning a pregnancy). In doing this, discussions about risk become less worrying and more about being able to make sensible choices to suit the individual.  

In the current climate of the media highlighting the potential medication risks on unborn babies, it can create a sense of fear and uncertainty at an already challenging time for expectant mums, where often the focus on the mum’s wellbeing & potential risks are not always fully considered or openly discussed alongside these issues about their baby’s health. This unbalanced view to risk management does not allow women with epilepsy to make informed choices for themselves and their baby; which can result in a fatal outcome, something some of our bereaved families are all too aware of. 

Guidelines, such as those recently launched by the Royal College of Obstetrics & Gynaecology (RCOG), are a necessary step to help improve care in this area, but those available are currently not sufficient on their own in supporting clinicians and their patients to understand, discuss and put plans in place to address risks associated with epilepsy such as SUDEP. Guidelines regarding risk communication need to be strengthened and specific in order to support clinicians. Implementation of such guidelines in practice is also an issue, one which impacts on providing standardised risk management for pregnant women across the UK. 

We welcome this increased focus into an area of risk that as a charity we know has been long neglected and publically misunderstood. However, guidelines and information about epilepsy risk management during and after pregnancy need to be strengthened and balanced to assist both clinicians and their patients to make tailored and informed choices with all facts available to them. This should be open, honest and detailed in order to be truly effective in improving outcomes. Tools such as the SUDEP & Seizure Safety Checklist, EpSMon & our SUDEP & Seizure Safety E-Learning help address this gap by providing information and a communication framework which help keep expectant mothers, and therefore their baby, safer. 

To find out more information about SUDEP and Pregnancy click here. 

Please remember that anyone who has been affected by an epilepsy-related death can contact our dedicated, specialist support team via 01235 772852 or [email protected]

You can also share your experiences via The Epilepsy Deaths Register to help future research and understanding of epilepsy deaths.  To help us continue raising awareness of this issue by sharing your story with us, please contact [email protected].