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11-year-old Josh doesn’t feel pain and didn’t even notice he broke his leg once. He wears ear muffs all day. He is afraid of rain which is a problem living in Tipperary.
He loves pizza, Santa Claus, and his family, but struggles daily with Fetal Valproate Syndrome (FVS). It was linked to the effects of anti-epileptic drugs that his mother, Alison, had been prescribed during her pregnancy.
This is one of 20 lawsuits involving the family’s prescription of drugs containing sodium valproate during pregnancy.
Used mainly for epilepsy and bi-polar disorders, British studies have shown links to birth defects since the 1980s.
The first case opens on Wednesday. Helen Fahy Maher, from Carlow, claims on behalf of her 16-year-old son Alex that she was not warned about stopping treatment during her pregnancy.
This echoes the sentiments of Alison, Josh’s mother, as she takes care of him full-time and supports her 24-year-old daughter who is affected.
“I took those pills, he’s a suffering man,” she said.
Josh was diagnosed with CHI in Crumlin last year and also has autism.
Alison has been at Epilim since she was a teenager and continues to receive treatment at Cork University Hospital.
“I was never warned about anything, I didn’t sit down with anyone or anything, not with a neurologist or a GP,” she said.
Josh was on a heart monitor after birth.
“When he stops breathing, the alarm goes off and I have to turn him over and blow in his face,” she said.
A personal assessment diagnosed autism before he started elementary school. He added: “I knew [about FVS] I saw that documentary on TV in England, otherwise I would never have known.’
He contacted OACS Ireland (Organisation Anticonvulsant Syndromes Ireland) for help. “I couldn’t believe it, it was like I was mourning my baby,” Alison said.
He is now fighting for his son and for himself. “I’ve heard there’s an advisory for parents in Dublin, there’s nothing like that here,” he said. “I’ve never heard of it here.”
A spokesperson for the HSE South East Community Health Service confirmed there was a contact officer for affected families in the area.
Alison OACS supports Ireland’s calls for an Irish inquiry similar to those in the UK and France.
“He needs proper help,” he said. “They don’t want another scandal out there, but it has to be an investigation, it really is.”
Her 24-year-old daughter, who did not want to be named, has now had three major surgeries for FVS-related issues.
“I was diagnosed in Crumlin at the same time as Josh,” he said. “I just want them to admit that what they did was wrong, I want them to apologize for what they did to our family. They prescribed this medicine to our mothers when they were pregnant, and it had a negative impact on our lives.”
Karen Kiely of OACS said: “OACS Ireland is delighted that the Irish courts will soon hear the first Epilim case. [sodium valproate].
Michael Boylan trial attorney Ciara McPhillips is representing the families.
“As in all cases of this nature, I hope to be able to achieve sufficient compensation to meet Joshua’s needs for the rest of his life, which will provide some comfort to his mother when the day comes when she is no longer able to care for him. it will be properly taken care of,” he said.
“I also hope that the defendant will accept responsibility, admit that mistakes were made and that Joshua was not injured.”
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