Mums demand answers over sodium valproate drug that harmed babies

“You can never forgive yourself.”

Tomas Cozens, 25, is one of about 20,000 people who were left disabled at birth by epilepsy medicine which was given to pregnant women.

Despite evidence dating back to the 1970s that sodium valproate, used to control seizures, could harm her unborn child, his mum Jo, from Caerphilly, was never told and that evidence was withheld from patients across the UK.

Five years since the publication of the Cumberlege Report, which concluded that the UK government should give compensation to those affected, ministers have said they are still considering its findings while victims are still waiting for answers.

Jo first noticed something was different with Tomas when he failed to meet some of his milestones.

He was later given a diagnosis of high functioning autism, among other physical and neurological disabilities.

But it was not until 2014 when Jo’s father drew her attention to an article on how another child had been affected by sodium valproate that she drew the connection.

Shortly after, Tomas was diagnosed in Australia with valproate developmental effects after being exposed to valproate in the womb.

“It was like a double-edged sword,” said Jo.

“It was nice to put some form of a label on it and have somebody finally acknowledge it, but then it really upset me to the core.

“I felt as though I was going to crawl into a ball and just never stop crying.”

Jo started to learn about other families who had been affected and began campaigning for the UK government to take accountability, saying she and thousands of other mothers deserve answers so they can be freed from the guilt they feel.

“You know, you can never forgive yourself. Because the medicine you took has harmed your baby,” she said.

For Tomas, his disabilities have resulted in various surgeries while also leaving him struggling socially and mentally.

He said: “Any kind of public response wouldn’t be enough for the damage that has been caused.

“I’ve received absolutely no financial aid for the problems growing up and still now for my future, absolutely nothing.

“I have to struggle, I have to try to earn, to try to learn. Even though I’m a little bit slower, probably a lot slower.”

Becci Smart, from Bridgend, is another mother who was not warned of the risks of sodium valproate.

She had already lost two children while taking the epilepsy medication topiramate and when her son Zak was born she was told he had sepsis, but this was later revealed to be valproate withdrawals, passed through the placenta.

She said she still felt dismissed by doctors.

“I can go to the doctor and Zak can be sat with me and he can be in agonising pain – physically, emotionally, mentally,” she said.

“All the doctors will sit there go ‘well you took sodium valproate, what do you want us to do’?”

Zak, 17, has Autism Spectrum Disorder, along with social anxiety, global developmental delay, and social and communication disorder.

He struggles to cope in school and sometimes has suicidal thoughts.

Becci provides round-the-clock care for him, which she said has affected her ability to earn and progress in her career.

But for her, accountability is more important than compensation.

“Someone has to hold their hands up and say we take responsibility for this,” she said.

“All the time someone’s not doing that, we as parents are living with that guilt – and it’s silly because it’s not our guilt to live with.”

Since the harmful effects of sodium valproate came to light, new measures have been put in place to mitigate the risks it poses to unborn children, including:

• Ensuring women of childbearing potential are on a reliable form of contraception
• Annual reviews with a specialist to ensure they are on contraception and that sodium valproate is still the best medication for them and signing a risk acknowledgement form
• Nobody being prescribed the drug without two specialists signing a risk acknowledgement form agreeing no other medication is better suited for them
• Discussions and an information leaflet on the risks of pregnancy while on the medication

Despite the issues that have emerged, sodium valproate is still an effective anti-seizure medication for many with epilepsy.

Consultant neurologist Owen Pickrell said it was now used as a last resort but, for a minority number of patients, it was still the best option.

“Other seizure medications don’t work for some people,” he said.

“Valproate can help them and it enables a far better quality of life for them.”

He also warned people to always consult a doctor before coming off any form of medication because, although rare, “people can get serious injuries during seizures and people do even die”.

The Department for Health and Social Care said: “Our sympathies are with those affected and we are fully focused on how best to support patients and prevent future harm.

“This is a complex area of work and the government is carefully considering the patient safety commissioner’s recommendations in full and we’re committed to providing an update.”