Mothers of children left disabled by a controversial epilepsy drug have warned their kids could ‘die in poverty’ without compensation as they fight for justice over a scandal ‘bigger than thalidomide’.
Since the 1970s, it has been known that sodium valproate can harm babies in the womb, yet alarmingly it has continued to be prescribed to pregnant women for the last five decades.
An estimated 20,000 children were exposed to the epilepsy drug while in the womb and many are now adults living with neurodevelopmental disorders such as autism and ADHD.
Families have told MailOnline how successive governments have ‘forgotten’ about them and they now fear their children will be helpless and poverty-stricken when they are no longer around to support them.
One mother, whose five children have all been left physically and mentally disabled by valproate, said: ‘This is a man-made scandal and tragedy. The whole of Westminster knows about this scandal… this is an insult to our children.’
In February 2024, families whose lives have been altered by the scandal were given a fresh glimmer of hope when England’s patient safety commissioner called on the Government to compensate those affected.
Dr Henrietta Hughes recommended a £100,000 payout after describing the drug’s damage as a ‘bigger scandal than thalidomide’, referring to the morning sickness drug which led to thousands of mothers giving birth to disabled babies.
Ministers said they would consider and respond to the recommendations but a deafening silence has left mothers fearing they have once again been forgotten – as they fight for compensation while they are still alive.
An estimated 20,000 children were exposed to the epilepsy drug while in the womb and many are now adults living with neurodevelopmental disorders such as autism. Pictured: Janet Williams and her sons Phillip (left) and Lee (top)
Emma Murphy is pictured with her five children who have all been left with disabilities as a result of the valproate scandal
Janet Williams (left) and Emma Murphy (right) have been campaigning in Westminster for decades
The Hughes report came after Baroness Cumberlege published a lengthy review into sodium valproate and two other medical interventions in 2020, which highlighted the denial and dismissal of patient concerns.
The Government issued an official apology in 2021, but the mothers fighting for justice want ‘action not words’.
Campaigners have proven that concerns over sodium valproate, commonly known by brand names Epilim, Episenta and Depakote, were first identified in the 1970s but the drug only started to be restricted by the government in 2018.
They ruled that valproate must not be prescribed to women or girls of childbearing potential unless they are on the pregnancy prevention programme.
It came after the Medicines and Healthcare Products Regulatory Agency said up to four in 10 babies were at risk of development disorders if the drug was taken during pregnancy and and one in 10 at risk of birth defects.
A drug safety update in January 2024 stated that women and men under 55 should not be prescribed the drug unless two separate specialist agree there is no other effective treatment.
But for many families, the restrictions have come far too late. They have laid bare the decades-long struggles they have faced as a result of taking sodium valproate, as their children, many now adults, continue to deal with the consequences.
They have watched MPs finally address miscarriages of justice ranging from the Post Office scandal to the infected blood scandal and believe they must be immediately compensated for ‘the biggest medical scandal there is’.
Emma Murphy – ‘It’s an insult to our children who were knowingly harmed’
Emma Murphy epitomises the true horror behind the scale of the valproate scandal.
She was just 12 years old when she was diagnosed with epilepsy and was prescribed sodium valproate – widely regarded as one of the best drugs to control seizures.
But while the drug was working well for her, she could never have imagined it would lead to her giving birth to five children whose lives have been changed by physical and mental disabilities.
Ms Murphy’s children have all been diagnosed with Fetal valproate spectrum disorder (FVSD) and are affected in various ways, with diagnoses of autism, cerebral palsy, incontinence, deafness and speech and language delay.
Now 44, she is demanding her children are compensated for being deprived of a normal life and missing out on the opportunities that their peers have had.
In a heartbreaking interview with MailOnline, she said: ‘This is a huge scandal but it is relatively unknown. It is the biggest medical scandal that there is.’
Ms Murphy and her husband Joe had their five children, Chloe, 21, Lauren, 20, Luke, 19, Erin 17, and Kian, 15, in close succession, with the first born in 2003. They were never warned that taking valproate while pregnant would risk any birth defects.
But when they were born, they were delayed in reaching milestones and suffered with delayed speech, walking difficulties and dysmorphic facial features. Ms Murphy said she kept questioning it with doctors but was ‘always fobbed off’.
Ms Murphy and her husband Joe had their five children, Chloe, 21, Lauren, 20, Luke, 19, Erin 17, and Kian, 15, in close succession. All have a range of disabilities
That was until 2009, when her sister called her and broke down in tears to tell her there was a woman on the news appealing for mothers to come forward if they had been on valproate. That woman was Janet Williams.
Ever since their two-hour emotional phone call, they have been campaigning in Westminster for justice and compensation.
Ms Murphy told MailOnline: ‘It’s abhorrent. There is so much anger that this has been allowed to happen. They knew about this in 1973 and purposely withheld their warnings.
‘We are just so angry it’s been allowed to actively continue. The regulators knew the risks, the government knew the risks, yet nothing was done until me and Janet started campaigning.’
Speaking about the ‘devastating’ impact it’s had on her children’s lives, she added: ‘It is life changing for them. They struggle so much on a day to day basis, like all the other valproate children, life is really difficult. It’s just heartbreaking.
‘The difficulties they all face, there is no support for anyone really. It does fall down to the parents to support the children, services are just not there anymore. That is why we fight and campaign so hard for compensation.
‘This was purposely allowed to happen to them and it shouldn’t have happened. They should be compensated, they’ve missed life chances, socialisation, not having friends.’
Ms Murphy said it is ‘just as big as the thalidomide scandal’, adding: ‘A precedent was set that the children damaged by thalidomide should be compensated – exactly the same should happen to the valproate children.
Ms Murphy and Ms Williams have been backed by MPs including Wes Streeting but are still seeking compensation for their children
She said not compensating the families is ‘compounding the harm that has happened’, adding: ‘Janet and I have been campaigning for 14 years in Westminster.
‘We shouldn’t be waiting this long, they are dragging their heels. It is furthering the insult to our children and families. This should have been answered immediately.
‘So many prominent MPs know about this, the whole of Westminster knows about this scandal.
‘We do [feel forgotten]. When a government and medicine regulators have purposely disabled children, I think there should be very swift action.
‘These children are disabled physically and mentally. They caused this. This is a man-made scandal and tragedy. They should support them.’
Janet Williams – ‘This is bigger than thalidomide’
Janet Williams was just 16 when she was diagnosed with epilepsy. She was prescribed valproate in the mid-1980s in a decision which would shape her and her children’s lives forever.
The mother-of-two, who is 60 today, has been campaigning relentlessly for justice after both of her sons, Phillip and Lee, were diagnosed with foetal valproate spectrum disorder (FPS) as a result of absorbing the drug she was prescribed.
Speaking about the scale of the scandal, Ms Williams, from Lancashire, told MailOnline: ‘It is massive, it is huge. It is bigger than thalidomide without a shadow of a doubt.
‘We have worked in the past with the thalidomide campaign team and even they have said when it comes to numbers, this is bigger than thalidomide.’
Ms Williams said her sons are now in their 30s yet are still dealing with the consequences as adult men after she took the drug for 10 years, including during her pregnancy.
Pictured: Janet Williams with her two sons, Phillip (right) and Lee (left), who were both diagnosed with foetal valproate spectrum
‘When our eldest son [Lee] was born, within 12 hours he showed signs of withdrawal. We didn’t know what it was at the time. He was very shaky and jittery, he wouldn’t take his feed. He was very sleepy, very floppy.’
Lee was rushed off to a neonatal intensive care unit (NICU) and spent seven days there as he battled through the withdrawal from valproate. Ms Williams said there was absolutely nothing said to her about how it would affect him in later life.
Their second son, Phillip, was born 16 months later in similar conditions, but it wasn’t until he was one and Lee was about two-and-a-half that they were both diagnosed with FVS.
Ms Williams said: ‘It was a mixture of emotions. You’re upset, worried and frightened about what is going to happen to them and angry at the fact that they’ve not told us about it [until then].’
Ms Williams and her husband Steven could see their children were not reaching the usual childhood milestones, including speaking and walking.
Lee was diagnosed with Asperger’s syndrome and ADHD at the age of 10, while Philip was diagnosed with dyspraxia aged seven.
‘The problems that they’re having now is what they’ve always had,’ she said, discussing the daily fights her sons, now aged 35 and 33, face.
She said after they finished college and university and stepped into the world, ‘they didn’t have a clue’. Talking about Phillip, who is worse affected, she added: ‘He’s constantly reliant on us as a family to help support.
‘I think it’s going to be really difficult for Philip to look after himself as he gets older. And once me and Steve are no longer here, that onus is obviously going to get put on his brother and that’s a major worry.’
Ms Williams, who was awarded an MBE for her tireless 30-year campaign about the harmful effects of valproate, says she is ‘more upset than angry’ these days.
‘It’s upsetting to think that they’ve allowed it to go on as long as they have with so many children being harmed, knowing full well they could have put a stop to it,’ she said.
‘It’s upsetting to think just how many children have been harmed in the way that Lee and Philip have been.’
Ms Williams says they are concerned that women are still having babies while taking valproate and the estimated 20,000 affected babies could be even higher.
She fumed at those shirking responsibility for the scandal, including the doctors and drugs companies and has called for the Government to stand up and address the report by the end of the year.
Catherine Cox – ‘My son could die in poverty’
Catherine Cox told MailOnline it is ‘criminal’ that her son has been forced to live with four types of epilepsy, ADHD and autism after she gave birth to him while taking valproate.
She fears her younger daughter has the ‘burden of responsibility’ to look after her older brother in later life – or he could ‘die in poverty’ without compensation or support.
The 52-year-old, fom Keyworth, South Nottinghamshire, was prescribed the drug after being diagnosed with epilepsy in 1988 when she was 16.
She married her husband, Darren, in 1995 but the couple struggled to have children – something put down to her taking valproate.
The couple were forced to undergo fertility treatment to have their first child as Ms Cox was diagnosed with polycystic ovary syndrome diagnosis. But Ms Cox was advised it was fine to continue taking valproate.
‘There were ample opportunities to warn me and transfer me to another drug,’ she said.
Catherine Cox told MailOnline it is ‘criminal’ that her son Matthew (pictured together) has been forced to live with four types of epilepsy, ADHD and autism after she gave birth to him while taking valproate
When she gave birth to her son Matthew in 2001, the major complications began.
‘He had quite a difficult birth. It was 31 hours. He wasn’t breathing when he was born. He was effectively drugged when he was born. He was withdrawing from the drug after he was born. He was a very sleepy baby.’
By nine months, Ms Cox could see her son was not meeting his milestones and was falling behind his peers.
When she came across research that warned children born to mothers on valproate had a risk of developmental issues, she felt like the ‘rug had been pulled away’.
The distraught mother booked an appointment but claims she was patronised and told: ‘Don’t be so stupid. You need to stay on it, don’t you know you could kill a baby if you come off this medication?’
The couple found another GP who were far more responsive to their concerns and Matthew was eventually diagnosed with FPS when he was 18 months old.
Ms Cox was moved onto different medication and the couple had another child, Charlotte, six years later who is now 17, having lived a normal life without the disabilities Matthew faces.
‘But what she has got is a burden of responsibility,’ Ms Cox said. ‘Because successive governments have ignored this issue and kicked it down the line.
‘There is a deficit to make up for my son, and for all of these children, we will provide for them while we’re alive, but what happens to them when we’re dead?
‘And that is my question to the government. What happens to to my son when we’re dead, because at the moment the burden of responsibility will fall on my daughter.
Matthew is just about able to work part-time in a bakery, but has been unable to secure a full-time job elsewhere as he is ‘knocked out at the first point’ in any aptitude tests.
‘Life is not set up in the 21st century to support children with vulnerabilities and young adults with vulnerabilities, and my fear is that someone will either take advantage of Matthew, or he will die in poverty because he’s not provided for,’ Ms Cox added.
Ms Cox hit out at politicians who fight for them when they are the opposition but fail to act when they come to power.
‘They have a duty to do something for our children, an absolute obligation,’ she said.
Patricia Alexander – ‘Our kids are going to become forgotten victims’
In 1997, Patricia Alexander was diagnosed with epilepsy and prescribed Epilim to control her seizures.
A year later, at age 20, she was told she would never be able to conceive as she was suffering from gynaecological issues.
At her young age, she was not thinking of having children but within three years she was suddenly pregnant with her husband. It was a moment described as a ‘miracle’ by her mother.
But the family could not have predicted that Joseph, now 24, would be born with a number of disabilities that have shaped his life. Nine years later, they had another child, Amelie, who has also suffered at the hands of valproate.
Ms Alexander, from Canvey Island, Essex, recalls being actively encouraged to carry on taking valproate so that her seizures would not have an impact on the baby.
‘My seizures at that time were uncontrolled and they did have the opportunity to take me off that medication and try something different, but they didn’t.
‘It’s just really terrible to think that that’s what’s happened to both my children as a result of not being told anything, despite asking several questions at several hospitals and to several clinicians.’
‘She described the scandal as a ‘postcode lottery’, revealing how her friend in a hospital around 10 miles away was informed of the dangers.
Both Joseph (left) and Amelie (right) are disabled as a result of their mother taking valproate during pregnancy. She was never warned of the dangers
She added: ‘I feel angry because at no point in any of this was I given an opportunity to have an informed choice for myself.
‘Nobody said to me, “These are the risks if you want to have a child on this medication, we’re going to need to take you off it first”.
‘I was denied that and I’m angry at that, because as a result of that, our children now have to live with this for the rest of their lives. Not the doctors, not the government, us and our children.
‘No matter how much I think this, this isn’t my fault because I didn’t know and I wasn’t given the information, the guilt is still there because I’m the one who ultimately took that medication that has harmed my children.’
It wasn’t until Ms Alexander stumbled across a Facebook questionnaire asking for women between 15 and 55 who were taking valproate to come forward that she first discovered the scandal.
‘It was almost like it had been written about my children’, she said.
Both children been delayed in reaching milestones, have hypermobility issues and had delays with speaking and toilet training. They were diagnosed together with FPS on Amelie’s 7th birthday, when Joseph was 15.
There were major complications with both births. Ms Alexander had a very long labour with Joseph, who was extremely sleepy, could not regulate his temperature and suffered breathing difficulties.
With Amelie, she was resuscitated at birth and suffered with hearing problems that have continued throughout her life.
Today, Joseph still struggles with choosing what clothes to put on in the morning and needs assistance with everyday tasks such as crossing the road. He has a shortened achilles which means he physically can’t stand up straight and has to walk on his tip toes.
Speaking about the lack of support from the Government, she said: ‘It’s almost like they are going to become forgotten victims. These children are victims of circumstance. This isn’t anything that has been done deliberately to them.
‘The reason the children are having so many difficulties is because the information wasn’t provided to us. The Government have been pushed into a corner, they can’t deny their decisions are the reason that this has happened.
‘The evidence is quite clear that Janet and Emma found, that it was purposeful. Everything was intentional to avoid telling women. Women even now are not being told.
‘It’s been moved from one Government to another. There’s nowhere they can run but in the meantime it’s us families that are dealing with our children and the life support they need.’
Ms Alexander fears that a cutback on benefits could be detrimental. She said: ‘If I wasn’t there to support them, the benefits would not be enough to help them survive.
‘They have suffered harm as a result of someone’s purposeful decision to not tell us so they need to now step up and support our children. They have a whole lifetime ahead.’
