Epileptic mum fighting for justice after two children born with health defects

The mother, who wishes to remain anonymous, has suffered from epilepsy and seizures throughout her life. 

In order to treat this she was given Sodium Valproate (SV); a drug that would become the focus of a national scandal and a retrospective government inquiry.

While SV is an effective medicine in controlling the symptoms of epilepsy, it is now understood to have caused around 200,000 disabilities in children since the 1970s.

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The mum was not informed of any side effects of SV (Image: PA)

This is the case for the Laffak-based mum, who was taking the drug during her two pregnancies in the 1990s.

The 52-year-old said medical professionals did not tell her of any possible side effects during the pregnancies, but both of her children were born with developmental conditions and lifelong birth defects.

This was first noticed when doctors found heart murmurs and epicanthic eye folds on both children, while the second child was born with "stubby" thumbs and "missing" knuckles.

As the children grew older, further disorders presented themselves such as autism, learning disabilities, speech difficulties, attention disorders, as well as abnormalities with features such as their teeth and ears.

In addition to the stress of managing these health conditions, it has been a struggle to get the necessary support in St Helens to help the children through their schooling and additional needs.

With both children now adults, the consequences of taking SV during pregnancy has proven to be lifelong, with extra support still a necessity in their day-to-day life.

The mum said that one child has a job but the other is unemployed and on Universal Credit.

Thousands of babies are reported to have been born with developmental conditions across the UK (Image: St Helens and Knowsley Teaching Hospitals NHS Trust)

With the Sodium Valproate scandal affecting thousands of families across the UK and still being administered to women with epilepsy, campaigners have been calling on the government to address the historic injustice.

The St Helens mum-of-two, who has been a part of these campaigns, said: "There are still campaigns going on and have been for the last 20 years [because] we need security for our children when we are no longer with them.

"We need to leave them with security for futures that will have tremendous difficulties and they cannot plan themselves.

"Thankfully, I have some great friends in the same situation where we share problems and give each other advice and support online.

"But I will fight until my last breath to get justice".

In 2020, an independent review was published by Baroness Julia Cumberlege which looked into the concerns surrounding Sodium Valproate, as well as the hormone pregnancy test Primodos and surgical mesh.

In the report, entitled 'First Do Not Harm', Baroness Cumberlege said: “I have conducted many reviews and enquiries over the years, but I have never encountered anything like this; the intensity of suffering by so many families and the fact that they have endured it for decades.

"Much of this suffering was entirely avoidable, caused and compounded by failings in the health system itself.

“We owe it to the victims of these failings, and to thousands of future patients, to do better."

Jeremy Hunt announced the independent review when he was the Secretary of State for Health and Social Care in 2018 (Image: PA)

The damning report made a series of recommendations for the government to implement, such as a Patient Safety Commissioner, specialist centres for those affected, and a redress scheme to meet the costs of providing additional care.

However, with the report almost two years old, the government has come under criticism as they have failed to implement the majority of its recommendations.

In response, a Department of Health spokesperson said: "We cannot ignore the fact that this report is one of several independent reports and inquiries to have concluded that our healthcare system disproportionately fails to listen to women and keep them safe.

"This government is determined to change this, not least through our work to develop the first ever Women's Health Strategy for England.

"This report is a powerful call to action, and we are determined to deliver meaningful change through the government's response."