Epilepsy in Pregnancy
Faye’s story – a voice for women with epilepsy

Faye
Epilepsy Research UK Supporter
Epilepsy advocate & blogger

Faye is an Epilepsy Research UK supporter and epilepsy blogger. Here Faye discusses how becoming pregnant led her to understand more about the issues facing women in the same situation.  She was inspired to take up blogging to provide more information and support and has become a key influencer on the Valproate Stakeholder Network. She is now Mum to happy and healthy Noah and a keen advocate for further research in this area.  

This time seven years ago I had just finished my first trimester and my seizures were returning.  I had always considered myself knowledgeable on my epilepsy, reading as much as I could to make sure I could take the best care of myself, but epilepsy and pregnancy were a whole new ball game. Add in hyperemesis gravidarum (excessive nausea and vomiting) and I was certainly not feeling the pregnancy glow everyone spoke about. I was lonely and frightened. No matter where I looked, there did not appear to be the support or help needed for women in my position.

My solution? Blogging. I thought if I felt like this then there must be many more women feeling the same way, so I started writing about my experiences and from that blog grew a support group.

Fast-forward those seven years. My bump is now a healthy, happy beautiful little boy who will turn seven this June. I sometimes wonder if he realises that my carrying him led to a lot of women not feeling so alone. My blogging has taken a back seat in recent years as I now focus more on my patient representation work. It would have been easy to walk away from it all when Noah arrived safely and I had a healthy child, however, I will never forget just how alone I felt. For that reason, I will always strive to be the voice for women with epilepsy, more so because I know that when you’re pregnant and feeling vulnerable you need someone who can shout a little louder than you are able to.

The work that keeps me busiest is the work I do around sodium valproate. When I was 22 and had met my now-husband, my epilepsy nurse changed my medication from sodium valproate to another anti-epileptic drug (AED). There was no big conversation, just a simple “it’s not great for pregnancy”. This is one of the best decisions that has ever been made for me. It meant when my time came to want children, I was not put in the position so many women have been and had to make choices between their health and seizure control and the risk to their unborn children.

Sodium valproate has been one of the most frustrating parts of my advocacy work, as progress has been slow. However, changes are happening. The harms of valproate are now widely known and spoken about publicly. This is yet another area that has changed so much since I was pregnant with Noah. Knowledge is power and giving women information to make informed decisions, whatever might be right for the individual, is so important. No one has been a greater champion of this than epilepsy specialist midwife Kim Morley, who I have got to know well in the last seven years. I have shared with her the many times that I feel the care I received should be replicated all over the country. My neurology and obstetrics care was coordinated so I would see both doctors at the same appointment. Without a shadow of a doubt, it is the reason Noah and I are here today to tell our story. Unified care is the thing I push most for when speaking to clinicians and policymakers.

One of the things I get asked so often is, ‘is Noah ok?’ – by that I believe people mean, ‘have the AEDs or seizures in pregnancy had any effect on his development?’. The short answer is no: none that I am aware of. He is doing well. For me, though it was a question that plagued me all through my pregnancy and the earlier years of Noah’s life. I always wanted to know the effects (if any) my AEDs had had on him and, even more so, I held heart-breaking maternal guilt about each of my seizures, even now when he appears to be doing well. So imagine my delight when I discovered Epilepsy Research UK were funding a study led by Dr Rebecca Bromley, investigating whether exposure to seizures in the womb affects neurodevelopment. As we gain more understanding of AEDs and pregnancy, it is crucial to understand any impact that seizures during pregnancy may have too. This will be another huge step forward in our understanding of epilepsy, pregnancy and the effects of AEDs.

We’ve come so far in seven years; this gives me hope of what is to come in the next seven years and beyond. I am so pleased that conversations around AEDs, seizures and pregnancy are now a standard part of epilepsy care for women. With continued advocacy, we can ensure that these conversations happen in the right way.

Research has never been talked about as much as it is right now. The world has watched as a vaccine was developed and successfully rolled out in record time, and it has made me reflect on the impact of research. To me, research provides hope. Research provides answers.

Research into epilepsy hasn’t been as glamorous or as talked about as the COVID vaccine. But it is always there, plugging away in the background, and that’s where the real magic happens. That’s where there is hope of a cure, hope of medication without side effects or hope that we may finally understand why we develop epilepsy in the first place. I don’t think you can put a price on that, and you can’t underestimate the value and effect it can have. It won’t always be as fast-moving as the vaccine roll-out, but slow and steady research is the backbone upon which hope is carried.

-Faye

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