'There is awful guilt': Limerick family seeks answers to Epilim scandal
Niamh Barry at her home in Askeaton. Her daughter is one of hundreds affected by the epilepsy medication Epilim being prescribed during pregnancy.
Niamh Barry was hit with “awful guilt” when her young daughter was diagnosed with foetal valproate syndrome linked to epilepsy medication Niamh took while pregnant.
Two years after that heart-wrenching moment, the Limerick family still wants answers about the prescribing of valproate, sold in Ireland as Epilim.
“I blame myself,” Niamh said. “I’m here thinking I have a child with special needs, it’s because of what I was on. So there is that awful guilt and you can’t get rid of it.”
Ms Barry began questioning her daughter’s lifelong challenges with everything from walking to education after seeing media reports on valproate. Her daughter was diagnosed at 18 by CHI at Crumlin, in a dedicated clinic set up by the HSE.
“Informing my daughter and her siblings was extremely difficult and no parent should have to go through that,” she said.
The dedicated clinic also identified a potentially serious heart condition linked to foetal valproate syndrome.
“I never knew at any stage during her life that she could have cardiac problems,” Ms Barry said. “At the moment her heart seems OK, but she needs to be seen by a cardiologist every year for the rest of her life.”
She praised West Limerick Early Intervention Services who supported her daughter as a child.
Niamh was heartened to hear in July that Cabinet approved an inquiry into historic prescribing of valproate.
“I’d love an apology,” she said, saying children with foetal valproate syndrome are not automatically entitled to medical cards.
“I think my daughter well deserves compensation for what she has gone through. I don’t know if she will ever be able to live on her own.
“I hope no one else has to go through this.”
She looks back in sadness at a miscarriage a year before her daughter’s birth. Some studies suggest links between stillbirth and valproate.
“We will never know,” she said. “They never said ‘don’t get pregnant, maybe we should change the medication’.”
She stressed: “It wasn’t ever mentioned that Epilim was in any way dangerous to be on.”
Letters in her medical charts, obtained under freedom of information, show discussion about “high and toxic” levels of Epilim. In 2003, one stated: “We took her valproate level yesterday and it was 1,370, the normal range being 347 to 693.”
Her medication was later changed, and their younger children are unaffected.
Advocacy group OACS Ireland (the Organisation for Anti-Convulsant Syndrome) said: “Niamh is one of the many courageous mothers coming forward to give her family’s account of what occurred to her, while other mothers silently say, ‘look what these people have done to me’. At this point, we would have expected the chairperson of the inquiry to be listening to these harrowing events.”
The HSE estimates up to 341 children experienced a major congenital malformation and up to 1,250 have neurodevelopmental delay caused by foetal exposure to valproate.
This month, England’s patient safety commissioner recommended a redress scheme for affected families there.
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