Laura Moore, 22, has been taking sodium valproate since the age of 15. The medication has enabled her to get on with her life but she knows that if she wants to start a family it will pose a serious risk to any baby during pregnancy. Here she discusses the challenges she faces and questions why she wasn’t given more treatment options when she was first diagnosed.
Laura Moore was diagnosed with epilepsy at the age of 13. She was initially prescribed lamotrigine but the medication made her seizures worse. A follow-on trial with levetiracetam left her feeling severely depressed.
So, at the age of 15, her doctor prescribed her sodium valproate. “They did mention that the drug posed risks during pregnancy for any future children, but at 15 I wasn’t thinking about having children’” says Laura, now 22. (Please see advice below on sodium valproate.)
Sodium valproate proved to be an effective medication for Laura and her seizures were brought under control, enabling her to live life to the full. She learnt to drive, worked, got her own house and is now at university studying for a degree in decommissioning and management of nuclear waste.
But she knows that one day she will want to have a family and is now facing the type of dilemma which she feels should never have been allowed to happen: choosing between her own seizure control and the health of any future baby during pregnancy.
Risk of spina bifida
“When I was 18, my doctors started talking more seriously about the risks involved with valproate and the chances that if I were to become pregnant, my baby could be born with spina bifida, “ says Laura. “But at the same time they did not want to mess with my medication. They said they would talk about changing it when I was thinking of starting a family.
“To be honest, I don’t want to come off valproate because it makes me feel safe with my epilepsy. If I have a fit I will lose my driving licence, my independence and my confidence. It will affect my whole life. I won’t be able to get to uni and that is a huge worry.
“It would be devastating for me and all my loved ones, especially after the hard work and the long journey it has taken to get me to where I am today.”
Adopting a baby
At one point, Laura became so worried about the risk that her medication posed for any baby that she decided she would only ever consider adopting a baby. But now she feels she would like to carry a baby herself.
“I know I want to have a family one day and don’t want to put my future children at risk. Pregnancy is a big stress for any woman, but when you have to worry about your meds as well, it makes it that much worse.”
Laura is upset that she wasn’t given the option to try more epilepsy medications that might have controlled her seizures while posing less risk during pregnancy.
“When I was first prescribed valproate, I was told it was my last resort. But there would have been loads of other medications I could have tried. Now I feel me and my unborn child or children are sentenced to a challenge and an even more stressful situation than epilepsy already is.
“I just wish that there was a medication that worked as well as valproate for me without the risks during pregnancy.
Going back to square one
“Because I wasn’t given many options with my treatment, I will have to go back to square one when I try for a baby. I will do it for the safety of my child, but it is such a scary process for an individual. And doctors and nurses don't understand because it isn't them going through it.
“I want to make a difference for other women to ensure they avoid issues like this.”
Find out more about our Safe Mum, Safe Baby campaign.
A report from the Commission on Human Medicines has shown that some of the most commonly prescribed epilepsy medications including carbamazepine, topiramate, zonisamide and phenytoin, pose an increased risk of harm to any baby exposed to them during pregnancy.
It is well established that valproate carries a high risk during pregnancy and should never be prescribed to girls and women of child bearing age unless they are part of a birth control programme.
Lamotrigine and levetiracetam are the safest drugs to take during pregnancy.
It is important that no woman should stop taking her medication without consulting her doctor. All girls and women of childbearing age should be called in for a review with their doctor so they can discuss their treatment options and ensure that they are on the safest possible medication for them.
Any woman who is planning a baby, should be referred to her neurologist.
Letter of support for a review with your GP
Our Medical Director, Professor Ley Sander, has written the following letter to support all women in requesting a review with their doctor.
Read about the challenges other women with epilepsy face when thinking about starting a family.