Latest news with #birthdefects
Daily Mail
7 days ago
- 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.'
CBC
27-05-2025
- General
- CBC
Universal screening for virus causing birth defects delayed, Manitoba advocate says
A Winnipegger who's worked for decades to raise awareness about a viral infection causing serious birth defects is disappointed — but not surprised — the province is delaying universal screening for the virus. The province's 2024-45 budget pledged the introduction of universal infant screening for congenital Cytomegalovirus (CMV), which can lead to hearing loss, cognitive impairment or other disabilities. Most people won't show any symptoms for the virus, and infected pregnant woman can pass it along to their children. Early detection can prevent infants from getting infected after birth, or allow other medical interventions. The province has said it's allocating up to $2 million a year for the program. A provincial spokesperson told Radio-Canada in an email last week the government is still working on establishing and resourcing CMV screenings. Rob Tétrault, president and founder of the Canadian CMV Foundation, said that while he's happy the province is moving forward with it, it's not happening as soon as the government originally promised. He said provincial officials recently told him they've delayed the implementation by a full year, and that the government is currently aiming for a November 2025 rollout. "The government had been very, aggressive with their timeline, so we were very pleased with that. But I was kind of expecting some delays," Tétrault said, pointing out that it took several years in other provinces with universal screening. "I was a little upset about the communication, the lack of communication. It would have been nice for some transparency." In Canada, universal newborn screening for congenital CMV is available in Ontario and Saskatchewan, according to a 2024 report from the Canadian Journal of Health Technologies. Alberta made the commitment to introduce universal screening in 2023, but is still working to implement it. Targeted screening is available in British Columbia, Nova Scotia and New Brunswick. 1 in 200 Canadian infants infected According to a report published by the medical journal The Lancet earlier this year, congenital CMV is the leading infectious cause of childhood disabilities including permanent hearing loss. The report said a timely diagnosis is "crucial" because the presence of CMV after 21 days could lead to postnatal infection. The Canadian CMV Foundation says one in 200 Canadian infants are infected with CMV during pregnancy, and one in five of those will have a permanent disability. In some cases, it can be fatal. Tétrault's son, Alexandre, was born with congenital CMV. He said that if it wasn't for an ultrasound screening, the infectious disease wouldn't have been caught on time for him to get treated, and to prevent further health complications from the condition. "We know for a fact that there are many, many babies that are born with CMV in Manitoba that didn't get identified, didn't get treated … because of the [rollout's] delay," Tétrault said. "We know that babies have suffered because of that. So that's incredibly demoralizing when we think of that." The Lancet report said early identification could allow for anti-viral treatment, and also lead to the timely detection of sensorineural hearing loss (SNHL). But it added that most infants with congenital CMV are unaffected and do not appear to be at risk of adverse outcomes except for SNHL. The Manitoba government said treatment will be available for infants who test positive for CMV once the screenings begin. Tétrault said universal screening for the infectious disease would allow other children to have similar outcomes to his son, who is now 17. "If we can identify the babies, we can treat them," he said. "Parents want it. Nobody wants a sick child."
