Latest news with #Epilim
Irish Examiner
3 days ago
- Health
- Irish Examiner
'No faith in the system' as mother waits year for epilepsy drug inquiry
Debbie Adams has been waiting a year to address an inquiry into the prescribing of epilepsy medicine containing Valproate to pregnant women. Her daughters, aged 13 and 11, were diagnosed with Fetal Valproate Syndrome (FVS) in 2020. This came after years of diagnosis for individual symptoms. Their youngest daughter also had double surgery for hip dysplasia at Temple Street Hospital. A letter advising that she needs a review as part of investigations into these surgeries has only added to the worries for Debbie and her husband. Last June, an inquiry was launched into the prescribing of valproate, which can cause serious birth defects and development disorders. Families were told the inquiry would begin "within weeks" but there is still no sign of it starting. Debbie chose not to attend the launch event. 'I wanted to get excited but the pessimistic side of me said 'how long are we going to be waiting?' and that's probably why I didn't go," she said. One year on, she is just tired. 'I've no faith in the system,' she said. This should not have happened. This has changed the trajectory of our family's life. She wants answers: why does she have a wall-planner in the kitchen covered with therapy appointments? 'The children have grown up like this and they think everybody's life is like this. We had different dreams for them,' she said, tearfully. The HSE now advises if a woman or girl becomes pregnant while taking valproate (brand name Epilim), their baby is at risk of serious birth defects and developmental and learning disorders. Debbie, who has been taking Epilim to control her epilepsy seizures, recalled speaking with her neurologist when pregnant with Isobelle. Debbie Adams took Epilim to control her epilepsy seizures. Picture: Moya Nolan 'I was warned about spina bifida and cleft lip and palate; they were the two things that I was aware of,' she said. She was relieved early scans showed no signs of these but does not recall discussion of wider risks under Fetal Valproate Syndrome (FVS). Isobelle and her sister Isla, who uses a mobility scooter, faced similar challenges as babies. 'My youngest was showing all the same delays — not crawling, not walking, not speaking, and I said this can't be normal to happen twice in the one house,' she said. She was reassured during a neurology appointment about any potential links to her medication. But soon afterwards, while in Portugal at a family wedding, she saw a report from the British parliament on Sky News. Devastating information They were talking about FVS, and she recalls racing out to find her husband to share the devastating information. Returning home, they met up with Karen Keely, founder of patient group OACS Ireland, which represents more than 130 families. 'It's a horrible reality,' she told the Irish Examiner,sitting in Karen's kitchen. 'You live in fear for them [the children] for when you're gone.' She pointed out that despite pledges to support affected families, they still had to battle long waiting lists and delays for therapies. She is aware of recent High Court cases taken by other families struggling for answers. 'For me that was like validation, it's happened, acknowledgement somewhere has taken place,' she said. Ms Keely said families feel "absolutely disgusted' by the delays to the inquiry. She said people want 'acknowledgement this has happened; harm has happened'. The Department of Health said when work on data protection issues are finished, 'it is anticipated that the public-facing elements of the inquiry will commence shortly thereafter". No definitive timeframe was given.
Daily Mail
29-05-2025
- Health
- Daily Mail
EXCLUSIVE My four children have all been left disabled after doctors told me I HAD to take this drug during pregnancy to avoid killing them
A mother-of-four whose children have all been left with disabilities after doctors encouraged her to take a drug during pregnancy without warning her of the risks has heartbreakingly revealed how her daughter is a 'prisoner in her own bedroom'. Karen Buck, 53, was diagnosed with epilepsy when she was 12 years old and initially had two drugs pumped into her that completely 'zombified' her and left her feeling like she was walking around 'asleep'. The devastating trauma she has faced throughout her life began shortly after - when a group of men took advantage of her vulnerability and gang raped her at the age of 13. Numb and sedated by the drugs, she was moved onto Epilim - one of the leading sodium valproate drugs to control epilepsy seizures. But this would tragically mark the start of another four decades of torture. Despite it being known since the 1970s that valproate can harm babies in the womb, Ms Buck and countless other expectant mothers have been prescribed the drug over the last five decades without being warned of the risk of birth defects. 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. While Epilim initially worked well for Ms Buck, her children, who are now in their 20s and 30s, were all later diagnosed with foetal valproate syndrome after doctors told her to carry on taking it - even upping her dosage - during pregnancy. Her third child, Bridget, was born with severe brain damage and spina bifida, is paralysed from the waist down and has so many complex disorders that she has been referred to as the 'world's worst affected child'. In an emotional interview with MailOnline, Ms Buck, from Stanmore, north-west London, said: 'Bridget is paralysed, she's brain damaged. She's bed bound and she's a prisoner in her own room.' Bridget, who is now 27, must be surrounded by oxygen tanks as she has Lennox-Gastaut syndrome, meaning she constantly has seizures which can cause her to stop breathing. Ms Buck has always cared for her daughter 24/7, even from a young age when she decided to take her out of school because she was being abused so badly. The mother-of-four has revealed how not only did doctors not warn her of the risks of taking Epilim while pregnant, they made sure she stayed on it and increased her dosage so she 'wouldn't kill her baby by having a seizure'. Ms Buck is one of thousands of parents across the world who are fighting for compensation. Her other three children, Josephine, 36, John, 34, and Christine, 22, have all faced individual battles as a result of being harmed by valproate, Ms Buck says. Josephine has spinal issues, crystallisations of the joint, nerve damage, polycystic ovaries and small hands. John has a twisted oesophagus, dyslexia, a hiatal hernia, and sleep hyponoia. And Christine has a heart condition and problems with her ears and back. But it was Ms Buck's pregnancy with Bridget that was the most complicated. At one stage, the foetus was in her ovary and her tubes - before eventually moving around to her womb. During the pregnancy, she started being 'violently sick' to the point it was inducing seizures. Pictured is Bridget Buck as a young baby. She was born with several defects and is now bed bound at age 27 Ms Buck explained: 'They increased my dosage while I was pregnant and I questioned it. I said, "I'm being violently sick. Is it wise to put my medication up? Couldn't you give me something for the sickness, rather than the seizures?" 'And I'll never forget this, they then said to me that if you have a seizure, you will kill your baby, so it's important for us to give you the medication.' Ms Buck says Bridget and her other children have been 'deprived' of a normal life as a result of her not being warned of the risk of birth defects. Speaking about Bridget's day-to-day life, she said: 'Every day is in the bed. Every day is in the same routine. It's get up, wash her, change her, medicate her, entertain her, feed her. If she has a seizure, you have to be on the ball. 'You've got to give her oxygen, emergency medication.' Ms Buck says the list of disorders that her daughter has is so long that she is known as 'the world's worst affected child'. 'She's paralysed from the waist downwards. She can't eat normal foods. She can't pick up a knife and fork and eat food. 'She couldn't pick up an orange and start eating it because the skin would choke her. 'If she's feeding and she starts coughing it's gone into the wrong part of her body, it's gone into her lungs.' Ms Buck was yet again rocked by another battle when she was diagnosed with cancer. She has since brought in a carer to assist her in looking after Bridget. In February 2024, families whose lives have been ruined 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 compensation 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. 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'. And while countries such as France have started paying out victims, the UK Government is still not acting. Speaking about the lack of urgency to redress affected families, Ms Buck said: 'I feel disgusted by the authorities. I feel disgusted by the Government. I feel disgusted by the regulators. I feel disgusted by the NHS neurologists. And I feel disgusted by the drug company because they should have put it in place. 'I feel they are not taking accountability to put things right. If they explained to me this drug could cause damage to my children I would have had my tubes tied right from the start, not afterwards so that I wouldn't have any more. I wouldn't be able to cope looking after more children. 'Bridget is the world's worse and it's taken a lot of me.' Speaking of the scale of the scandal, she added: 'It's bigger than thalidomide. It's bigger than the contaminated blood scandal. It's bigger than the Post Office scandal, and it's getting bigger.' Ms Buck continued: 'I've been through the courts, it failed. I've witnessed the Cumberlege report, that went on for five years and then now the Hughes report, nothing's come. 'Do I trust them? No. They've not listened to all the family stories. I listen day in, day out, to the families. Nobody's listening to them. Until they show me something for all my families that I'm listening to, then I will say, OK.' 'You need to practice what you preach. Don't throw out easy apologies. 'You have done damage to all these people. You are accountable for this and you've let all these women down, that's what makes me angry.' Ms Buck says she has been let down throughout her life, including when she was prescribed drugs that 'zombified' her as a 12-year-old. She was initially diagnosed with epilepsy due to the trauma she had suffered when she was a young girl, when her parents split up and her mother's new boyfriend started abusing her. The initial epilepsy drugs left her feeling like a 'zombie' and she wanted to stay away from her mother's home because she was living with someone abusing her. She was only on those drugs for three to six months, but during that time she was gang raped by men who preyed on her vulnerability and sleepiness. Recalling the traumatising ordeal, she said: 'I was only young, I was probably 12 or 13, very young. I actually kept that all to myself, I was so scared. The only person I told was a doctor but he just overlooked it like I was a child seeking out attention. He said, "It was just a drug making you hallucinate, we'll put you on a different drug". I'm not imaging this, these things happened to me. Ms Buck was then put on Epilim but throughout all four pregnancies was never told there were any risks. 'I should have had more guidance, I should have had the support,' she said. 'They should have given me a choice, they didn't tell me anything about what this drug was capable of doing. 'It is appalling the way we have been treated.' 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. Jo Cozens, the Chairperson of Organisation for Anti-Convulsant Syndrome (OACS Charity) who support families harmed by valproate, told MailOnline: 'I'm extremely disappointed frustrated beyond words.' Ms Cozens, who has requested urgent meetings with the Government but has not heard back, said: 'Not even an acknowledgement is so insulting to families.'
Daily Mail
04-05-2025
- Health
- Daily Mail
EXCLUSIVE The birth defect scandal bigger than thalidomide: 'Forgotten' mothers of children left disabled by epilepsy drug taken during pregnancy fear kids will 'die in poverty' without compensation
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. 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'. 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. 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. '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. 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. 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.'
RNZ News
21-04-2025
- Health
- RNZ News
Long battle over anti-seizure medication risk to the unborn
Brand names of sodium valproate include Depakine, Epilim, Depakote and Stavzor. Photo: AFP There are concerns patients prescribed anti-seizure medications still aren't being made aware of the risks to unborn children of taking them. One drug, sodium valproate, is of particular concern. It's used to treat epilepsy, bi-polar disorder and migraines, but has been found to cause harm to babies - including birth defects and neurological issues. In the UK, it's over a year since a government inquiry recommended financial redress for the estimated 20,000 children affected by sodium valproate exposure. So far, nothing has happened. Children in New Zealand have also been exposed to the drug - although the Ministry of Health says the numbers are decreasing, from 124 pregnancies in 2007 to 9 in 2023. Denise Astill has long sought details on the number of pregnancy exposures to anti-seizure meds. Sodium valproate - marketed as Epilim - has been used here since 1975. In 2018 she petitioned Parliament about it, calling for an inquiry into the numbers harmed. It was not accepted. Her twin daughters have Foetal Valproate Spectrum Disorder - it's what motivated her to set up the organisation Foetal Anti-Convulsant Syndrome New Zealand, her service to which earned her the New Zealand Order of Merit this year. She joins Kathryn to detail why she fears patients are still not getting the information they need about these medications. (A warning - you should consult your doctor before stopping or changing any anti seizure medication)
