I was diagnosed with juvenile myoclonic epilepsy (JME) when I was about 20 years old. Since then, I have been prescribed several anti-epilepsy drugs to help control my seizures. The first drug I was prescribed was epilim (sodium valproate) and I have remained on this drug ever since. This dose was gradually increased over time, until I was on 2000mg a day. In addition to epilim, I have also been prescribed other AEDs including phenytoin, clonazepam and lamotrogine, all of which have been used alongside the same high dose of epilim. We have two children; Joseph who is 20 and Amèlie who is 11.
We had been in contact with so many clinicians during both my pregnancies; neurologists, obstetricians, gynaecologists, epilepsy nurse specialists and midwives. They all knew I was taking various epilepsy medications and all knew that we were concerned about them. Our concerns were dismissed by many. One epilepsy nurse specialist told me that I was ‘not the first woman with epilepsy to have a baby’ and I ‘certainly wouldn’t be the last’. I felt very belittled by his response and that my questions and concerns were of no importance.
I first learned about Fetal Valproate Syndrome (FVS) / FACS in 2016, by which time Joseph was 15. I completed an Epilepsy Action survey, aimed at women of a certain age. It was about the effects of sodium valproate when taken during pregnancy. It was heart-breaking to read each question of the survey, discovering that each and every diagnosis, difficulty and disability that our children have are all attributed to my medications.
I was devastated, particularly as we had not been warned about any of this. Not when I was first prescribed the drugs, nor prior to becoming pregnant. I secretly cried lots about it and could not sleep at night for a very long time. I was feeling guilty for having epilepsy and feeling guilty for taking the medication that I needed, which ultimately harmed our children.
After this, I continued to raise my concerns at every appointment until, one day, one paediatrician finally listened to me. She was unaware that I had taken valproate during pregnancy. She said that it was “the last piece of the puzzle” that she had needed to finally understand why Amèlie had so many difficulties. That single appointment was a turning point for us. It was some acknowledgement that my medication had caused harm to our children. We finally managed to see a specialist in this field and both children were subsequently diagnosed with FVS.
Joseph and Amèlie will never lead an independent life. My husband and I are concerned about what will happen to them when we are no longer here to look after them both. Will there be a care package available to them, to support all their needs?
It’s so frustrating to read women’s posts on forums, asking questions and posting photos of their babies, and knowing what I know. These women are being told they can take certain epilepsy medications during pregnancy and I find it so difficult to hear. It’s clear some of them still don’t know about the risks.
I’d have liked to have had more children, but I am still on epilim now and am reluctant to change my medication because it helps to control my seizures. I can’t run the risk of having more seizures and losing my driving licence. Driving means that I can work, support my children and take them to their appointments.
I really hope that this review means that women can have conversations with their doctors and get all the detail they need to make their choices.