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.