Two mothers whose children have been affected by sodium valproate have urged the government to compensate victims
Emma Murphy says she used sodium valproate throughout her pregnancies with no warning (Image: BBC)
Two mothers have claimed they weren’t warned of possible birth defects after taking an epilepsy drug.
Emma Murphy was diagnosed with epilepsy at age 12 and was medicated with sodium valproate, which she used throughout her pregnancies after “no warnings” of possible harm to her unborn babies were given.
Emma’s five children have now been diagnosed with various medical conditions, including deafness and cerebral palsy. Appearing on Tuesday’s (November 3) instalment of BBC Breakfast, Emma appeared alongside Janet Williams as they urged the government to compensate families impacted by the use of sodium valproate during pregnancy.
Emma told hosts Jon Kay and Sally Nugent: “There were no warnings given by healthcare professionals. We were informed there was a possibility of cleft lip or palate, maybe spina bifida, but that would be picked up on any scans we had and we were reassured by that.
“But there were no warnings regarding a syndrome that it would cause autism or lifelong disability, and I have got five children affected now. It’s just completely devastating.”
Explaining how sodium valproate has affected her own five children, Emma added: “There’s a diagnosis of autism, cerebral palsy, deafness, incontinence, sensory processing disorder, language difficulties, learning disabilities, it is a huge spectrum that has completely devastated not just my family, but thousands of families in the UK.”
Sodium valproate, which is also used to treat bipolar disorder, can cause physical harm in the womb, and children can be born with a cleft palate and spina bifida, as well as neurodevelopmental disorders.
The medicine now carries warnings about use during pregnancy, with the NHS website stating: “Sodium valproate is not recommended in pregnancy, as it can cause birth defects and problems with your child’s learning and behaviour. If there’s a chance you could become pregnant while taking this medicine, your doctor will enrol you on Prevent, the valproate pregnancy prevention programme.”
Mum-of-two Janet was diagnosed with epilepsy when she was 16 and was also prescribed sodium valproate. However, after giving birth, her son suffered from withdrawal symptoms and was taken down to the Neonatal Intensive Care Unit (NICU).
“We knew nothing about it, we had nothing explained to us, so just him going down to NICU was a worry. They eventually explained to us about the withdrawals but nothing was said to us about the syndrome”, Janet confirmed.
When she welcomed her second son into the world, she was met with the same heartbreak as he was also taken down to NICU as he suffered from withdrawals.
Janet later received a letter confirming it was the Epilim, which is a brand name for sodium valproate, that had caused her children to be unwell. Both sons have been diagnosed with autism.
Jon asked: “How do you know it’s the drug, Emma? There are some children who will have the conditions and symptoms that your kids have got. How do you know it is the drug that is to blame?”
Emma replied: “There is a definitive syndrome now called Fetal Valproate Spectrum Disorder, and we know it is that that causes this.”
She also urged Andy Burnham to meet with her and help the victims get justice and compensation. Jon pointed out that while the Prime Minister is in a position of power, there are other “scandals” including “nuclear test victims, the blood scandal, the Post Office scandal”, that also require compensation, and there is “not much money”.
Jon said: “The government says it’s working on it, there has been a huge report. They say they’re going through that, making progress but they haven’t yet made a decision on how to provide financial redress.”
Emma and Janet are both starring in the upcoming BBC documentary Mums v Big Pharma, which airs on November 9, and details a decades-long campaign by British mothers against drug companies, doctors, and the government.
The Department of Health said the Government was determined to make progress on its response to the Hughes report, adding it was clear those affected have already waited far too long for answers. A decision has not yet been made to provide financial redress, it added.
A statement from Sanofi, the pharmaceutical company behind Epilim, said: “Sanofi understand the concerns of persons affected by valproate and their families and their need to be heard. The use of valproate in pregnancy is an incredibly complex issue that involves many different parties including government, regulators, doctors and other prescribers, pharmacists, manufacturers, patients, and other people affected.
“The supply of valproate, an essential medicine used to treat serious and potentially life-threatening conditions, is subject to detailed regulatory requirements and supervision by the regulatory authority. We have provided information to the regulatory authorities, under their supervision and in accordance with their evaluation and decisions, information has been given to healthcare professionals and patients that reflect the evolution of scientific knowledge.
“We are committed to working with all concerned stakeholders to continue educating about the risks and precautions for the appropriate use of valproate.”
BBC Breakfast airs 6:30am on BBC One and iPlayer