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08/02/2016

Mum tells of loss of baby son after sodium valproate

Juliet and Steve are a picture of happiness with their little boy Samuel. But the couple have also known great heartache. They lost their first son, Christopher, 25 weeks into Juliet's pregnancy after she had been taking the epilepsy drug sodium valproate. Here Juliet shares their story in the hopes that no other family endures the pain they have been through.

When Juliet and her husband Steve decided to start a family, the first thing they did was to seek pre-conceptual counselling.

Juliet was taking  sodium valproate to control her seizures and the couple were anxious to make sure that this would not have any adverse effects on an unborn child. Six years previously, Juliet's epilepsy specialist nurse had advised  her that there were potential health risks associated with the drug during pregnancy and the couple wanted to  make sure  all would be well before trying for a baby.

Higher risk

Juliet explains: 'We waited several months for what turned out  to be a five minute appointment with my neurologist and he told us everything should be fine.

'He said because I was on sodium valproate - 3,000mg a day - there was a slightly higher risk of our baby being born with a minor malformation such as a cleft lip or palate, but he assured us the risk was minimal.

'There was no mention of any links to autism, neurological disorders or sodium valproate syndrome and he didn't offer any advice about lifestyle issues. In fact he said that as I progressed through my pregnancy, I may have to increase my dose of sodium valproate.

'We felt confident that it was safe for us to start trying for a baby.'

A real legacy for our little boy will be if we can raise awareness about sodium valproate and pregnancy so that other  women are aware of the risks and can make a properly informed decision

Heart-breaking decision

Twenty  weeks into Juliet's pregnancy, scans showed that the couple's much wanted baby son - Christopher - had spina bifida, a collapsed stomach and an extra vessel around his heart. Christopher was not expected to go full term and his quality of life, if he survived, was expected to be severely limited.

At 25 weeks, Juliet and Steve made the heart-breaking decision not to continue with the pregnancy.

'It was a horrible and hurtful decision to have to make,' says Juliet, 'and we will carry that pain with us all our lives. But we take comfort in the fact that Christopher will not be hurting, that he is free from pain.

'Tests later confirmed that Christopher had spina bifida and a foetal medicines specialist said this was most likely due to the sodium valproate.'

Risks during pregnancy

Now the couple is desperate to make sure the same thing doesn't happen to other families. 'If our story can stop this happening to one other baby, it will make some sense of Christopher's life,' says Juliet.

'Sodium valproate is a brilliant drug if you are a man or if you are not a woman or girl of childbearing age. But all women and girls with epilepsy should be informed of the potential dangers associated with the drug during pregnancy.

'We learned too late just how serious the risks can be. I wish I had been signposted to Epilepsy Society where I could have got advice about pregnancy through their leaflets and website.

'It is a huge relief to see that the government is now taking positive steps to ensure that all women are aware of the risks associated with sodium valproate.

'A real legacy for our little boy will be if we can raise awareness about sodium valproate and pregnancy so that other  women are aware of the risks and can make a properly informed decision.'

More information

You can read more about risks associated with sodium valproate and find the toolkit on the MHRA website.