Michelle's story

Michelle Hackett was 16 years old when she had her first baby, a little girl called Courtney. Michelle was taken into hospital with pneumonia and Courtney was born by Caesarean section.

But within 24 hours, Michelle had started to have seizures and was diagnosed with epilepsy. She was prescribed a cocktail of anti-epileptic medication, including sodium valproate. The medication left her completely dazed and unable to look after Courtney by herself. 'When my mum handed Courtney to me, I gave her back,' Michelle recalled. 'I said "she's not mine"'.

Nine months after the birth of Courtney, Michelle discovered she was once more six months pregnant.

Sodium valproate side effects

'I had a scan and the hospital told me that because I was on sodium valproate, I would have to get rid of the baby. They said it could be born with cerebral palsy and that I should have an induced labour and give birth to the baby still born. I refused. I said I would keep the baby and deal with the cerebral palsy.

'I asked why I hadn't been told about the dangers around sodium valproate but they said because I was young, they didn't think I would get pregnant again.'

Michelle's second baby, Stephen, was born with six toes on each of his feet and an underlying jaw. When his teeth came through, eight of them were black and rotten. He also had un-descended testicles.

Six toes on each foot

Michelle continued: 'I was very relieved Stephen didn't have cerebral palsy. I really feel he was one of the lucky ones but as a baby and toddler he had to have a lot of operations to correct his problems. He had his extra toes removed at one, his blackened teeth were removed at two and then he had to have an operation at three to correct his un-descended testicles. He would have to have his lower jaw broken to correct it, but we have said 'no' as it doesn't cause a problem and he's already been through so much.

'I am lucky that I have had the support of my partner Steven who has been with me over the last eight years. I have also had a lot of support from my mum and dad and my brothers, so we have come through the other side. 

Furious at lack of information

' I feel absolutely furious that I wasn't told about the side effects of sodium valproate. Their excuse was absolutely rubbish. When I hear about mums with sodium valproate and what they go through it is heart breaking. It is terrible to be given a drug for a severe illness and not be told about the side effects.'

In 2007, Michelle insisted on being taken off sodium valproate. 'Although it helped to control my seizures, the side effects weren't worth the risks. It had also given me terrible memory problems and there are seven years of my children's lives that I really can't remember.'

Michelle is now taking levetiracetam  and a year ago she had another baby daughter Thea. 'Thea is absolutely fine and I had such a great  pregnancy. When I was expecting Stephen I worried all the time about whether he would have cerebral palsy and I was like a zombie on sodium valproate. When I was expecting Thea, I smiled all the way through my pregnancy. I had a natural birth and although it went on for three days, in a strange way I enjoyed every minute.'

Are you receiving the right information?

Our sodium valproate survey showed us that almost 70% of the women surveyed haven't received new safety warnings about the dangers of taking it during pregnancy. Read the guidelines

Are you a girl or woman of childbearing age and are taking, or have taken, the epilepsy drug sodium valproate?

We are re-launching our survey to find out how aware women are of the potential risks around sodium valproate, if taken during pregnancy. 

Even if you are taking a different drug, please fill in our survey