Pregnancy can affect seizures, making them more frequent and severe. Tragically, epilepsy is the cause of one in every ten maternal deaths. But despite these risks, women with epilepsy don’t always get the support they need during pregnancy, and medical staff often have limited experience of the condition.
Additionally, anti-seizure medications can affect the unborn child’s development. It took decades for people to recognise that sodium valproate, one of the most commonly used anti-seizure medications, can cause severe malformations in babies and long-term neurodevelopmental problems. But we still do not understand why these harms occur or how to mitigate them. Nor do we understand the impact of newer medications, or the potential for risk posed to children fathered by men taking anti-seizure medications. To fully remove the burden of anxiety, and the risk to future generations, we must develop strategies and newer treatments that prevent harm.
Reproduction & Hormones is one of the Epilepsy Research Institute’s four key strategic research themes. Each theme lead is supported by a task force group of leading UK scientists and clinicians to drive a programme that will secure long-term research investment. Through the Reproduction & Hormones programme, we will not only enable those living with epilepsy to make fully informed decisions on their treatment, but also develop treatment options that will not cause any malformations or severe neurodevelopmental problems.
By enhancing the UK research landscape in this area, more projects which aim to make pregnancy safer for women with epilepsy and their children can be funded. Projects like Dr Anita McGrogan’s.
Normally, to assess the safety of a drug, you would conduct a clinical trial. But pregnant women are often excluded from clinical trials, precisely because of the uncertainty around the drug’s safety for their unborn child. To get around this contradictory situation, we need a different approach.
In a project funded by the Epilepsy Research Institute, Dr Anita McGrogan is using routinely-collected healthcare data to understand how women with epilepsy have been treated during their pregnancy. This research could shed light on the safety of anti-seizure medications during pregnancy, providing women and their healthcare team with vital information to help everyone make the best decisions for their care.
Women with epilepsy need to know more about medication safety when balancing benefits of treating and preventing seizures with risks to their unborn child. Ultimately this research will lead to safer pregnancies and healthier outcomes for babies and children born to women with epilepsy.
Dr Anita McGrogan, University of Bath
As well as directly funding research, another key strategic objective of the Institute is ensuring the research priorities of people affected by epilepsy are actioned and advocated.
The Institute’s Shape Network has collaborated with the University of Birmingham on a project which aims to provide better care to women with epilepsy during pregnancy. Funded by the National Institute for Health and Care Research (NIHR) the EpiSafe project will develop and test a personalised ‘care bundle’, over the course of five years. This will provide tools and guidance to help healthcare professionals and women jointly decide how their epilepsy should be treated during pregnancy.
Listening to the needs of women affected by epilepsy is at the heart of this project and the Shape Network have been instrumental with helping the research team to develop the personalised care bundle and will continue to be involved as the project progresses.
Science has the ability to answer the unanswered questions, but the real power of research comes from putting the voices of women front-and-centre. Thanks to your investment in research, we can continue our work to ensure every woman has a safe pregnancy, and every baby has the best possible start to life.
Learn more about the research in this area that you’re helping make possible.
