Epilspesy: pre-pregnancy planning

Susan Cole, of Haringey, London, UK, describes her experience of epilepsy, and argues that women with epilepsy need more research so they can make informed choices about planning a pregnancy.

I was diagnosed with epilepsy in 1981 when I was 18. From that moment on, I was under the care of neurologists and, with medication, my seizures stabilised.

I was brought up to respect the wisdom of consultants so I took my treatment very seriously and always took responsibility for my medical health.

Although I never really saw my epilepsy as a disability, it did change me as a person. I found it sometimes brought out the protective side in people, forcing me into a position of feeling dependent. I became more careful about who I told about it. All the same, I tried to keep a balance between being careful about my health, and being realistic and enjoying life.

Pre-pregnancy planning

In 1985 my medication was switched to sodium valproate [AUDIO NOTE SO-DEE-UM VAL-PRO-ATE]. The neurologist I was seeing at the time considered this carefully and advised me strongly never to get pregnant while using this drug.

Some years later, now in a stable relationship, I was able to seriously consider having a baby. By then I had moved house, so I changed neurologist. My new neurologist advised me to keep taking the medication as prescribed. I was surprised by this as I had always been advised not to get pregnant on valproate. I questioned it, but he reassured me that I would be OK as long as I took a higher dose of folic acid. He told me to increase the dose of valproate slightly as the need for the medication would increase through my pregnancy.

The thing he had not explained to me was that the increase in dose was needed because the baby would absorb the drug from my body. I found out later that valproate crosses the placenta and was being ‘stored’ by my baby. I should have guessed it when the neurologist said that I may have a sleepy baby, and we joked that it was probably better that way – at least I would get a good night’s sleep. When my baby was quiet in the womb and didn’t move much, I didn’t worry because of what he’d said.

Maternal instinct

Maternal instinct, gut feeling and common sense overcame my compliant attitude and so I secretly cut down my medication a little. My pregnancy sailed on happily until I had a seizure at eight months. By now my baby was big and strong, and we were fine, but I was put on a much higher dose of the drug for the last few weeks of my pregnancy.

When I gave birth, my daughter was fine – all fingers and toes present, good weight and height. Of course, she was beautiful as well.

Following a successful birth, I quickly became pregnant again, having been told by the neurologist to continue with the medications at the same dose as before. By this time he had added a small dose of lamotrigine [AUDIO NOTE LAM-O-TRIG-NEEN] as well. I was not told that a high dose, plus a second medication, would significantly change the risk factors to my baby.

My second daughter was born with Fetal Valproate Syndrome as a direct result of me taking a high dose of valproate, in addition to a second medication, during my pregnancy.

Statistics show that about 50% of babies born in the UK are unplanned. Around 250,000 women in the UK have epilepsy, most of whom are taking medication. From their initial diagnosis they are usually told how important it is to plan their pregnancy, and the National Society for Epilepsy advises all newly-diagnosed women to take 5mg of folic acid daily in case of an unplanned pregnancy. However, these guidelines have only come about in the past two years, and many women still rely on the information given to them when they were first diagnosed.

Long-term research

As far as I could, I followed the advice of my doctors. Alcohol is teratogenic, and anti-epileptics are too. I gave up smoking and drinking to safeguard my baby, but I was not told to reduce or change my medication.

When you are treated for epilepsy, the neurologist’s brief is to stop you having seizures. Although my first neurologist treated me holistically, the neurologist who saw me through pregnancy was far more concerned with stopping me having seizures, and did not seem interested in the effects of the medication on my baby.

The medical profession must make sure that long-term research is done on the development of children whose mothers have been taking anti-epileptic drugs (AEDs).

Research on the effectiveness of drugs on epilepsy is thorough and there is now plenty of evidence on the major congenital malformations (MCMs) of babies. However, there has been a real gap in research on the cognitive development of children as they move from birth to childhood.
The tendency has been to blame genetic factors for the developmental problems that seem to occur in the children of epileptic mothers. For years, it was assumed that epileptic mothers automatically gave birth to children who had problems because of the mother’s epilepsy and not because of the drugs they were taking.

Sodium valproate has been in use for over 25 years, and thorough research, looking at its long-term side-effects on children, simply has not been done in the past. Many studies were done in the 1980s confirming the slightly higher risks of MCMs with valproate, but only now is research being done looking at the cognitive development of children.

I am aware of several reports published over the last few years in the medical journals, the American Journal of Medical Genetics, the Journal of Medical Genetics and the Journal of Neurology, Neurosurgery and Psychiatry, which point to the need for more research into the neurological, developmental and educational effects on the children of mothers who have taken valproate during pregnancy. One report in 2001 considers that statistics on major congenital malformations ‘may simply represent the tip of an iceberg’.

Informed choice

My advice to all women taking AEDs is to insist that their neurologist gives them clearly written information about the risks of their medication. For me, the damage done by taking the drugs during pregnancy was far greater than that done to my baby when I had a seizure during pregnancy. Trusting my instincts worked better for me than listening to the advice of the neurologist. This was clear when my first baby was fine and my second was not. If I had been told that my child had a one in five chance of being affected by my medication, I would have changed to a safer one before becoming pregnant.

In the meantime, a group action against the manufacturers of valproate is being taken under the Consumer Protection Act, by Messrs Irwin Mitchell. Perhaps this will spur on more research that will help mothers avoid taking these risks in the future.

First published in Disability, Pregnancy & Parenthood international, Issue 53/54, Spring/Summer 2006.

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