I took the tablets and he's the one suffering' says mother prescribed anti-epilepsy pill when pregnant
Josh, aged 11, cannot feel pain, and he once did not notice he had fractured his leg. He wears ear-defenders all day. He is afraid of the rain, which is a problem living in Tipperary.
He loves pizza, Santa Claus and his family but struggles every day with foetal valproate syndrome (FVS). This is a condition linked to the effects of epilepsy medication prescribed for his mother Alison while she was pregnant.
The family is one of 20 taking court cases related to the prescribing of medication containing sodium valproate during pregnancy.
Used mainly for epilepsy and bi-polar disorder, a British inquiry stated evidence of links with foetal disabilities have been emerging since the 1980s.
The first case opens on Wednesday. Helen Fahey Maher from Carlow, on behalf of her son Alex, 16, will allege she was not warned during her pregnancy to come off the treatment.
This echoes what Josh’s mother Alison feels as she cares full-time for him and supports her daughter, 24, who is also affected.
“I took those tablets, and he the person who is suffering,” she said.
He is going to suffer for the rest of his life for that. It still hurts me. I have turned that hurt into anger, because they never told me about the risks.”
Josh was diagnosed in CHI at Crumlin last year, and also has autism.
Alison has been on Epilim since she was a teenager and continues treatment at Cork University Hospital.
“I was never warned about anything, I never had a sit-down with anyone, or anything, not with the neurologist or with the GPs,” she said.
Josh was on a heart monitor within days of birth.
“The alarm would go off when he stopped breathing, I’d have to turn him and blow in his face,” she said.
We were listening to that machine all the time, every heartbeat.”
A private assessment before he started primary school identified autism. She added: “I found out [about FVS] from a TV programme that was made in England, I watched that documentary, otherwise I would never have known.”
She got in contact with OACS Ireland (Organisation Anticonvulsant Syndromes Ireland) for help. “I did not want to believe it, it was like I was in mourning for my child,” Alison said.
She is now fighting for her son, and for herself. “I heard in Dublin there is counselling for the parents, there is nothing like that here,” she said. “I never heard of that here.”
A spokesman for HSE South-East Community Healthcare confirmed a liaison officer is in place for affected families in the area.
Calls for Irish inquiry
Alison supports OACS Ireland’s calls for an Irish inquiry, similar to those held in the UK and France.
“He needs proper help,” she said. “They don’t want another scandal out there, but that inquiry needs to happen, it really does.”
Her 24-year-old daughter, who did not want to be named, had three major operations for issues now linked to FVS.
“I was diagnosed at Crumlin at the same time as Josh,” she said. “I just want them to admit what they did was wrong, I want them to apologise for what they did to our families. They affected our lives by prescribing this drug to our mothers while they were pregnant.”
Karen Keeley from OACS said: “OACS Ireland are pleased that the Irish courts will soon be hearing the first case in respect to Epilim [sodium valproate].
We support all mothers going forward who wish to take cases in order to seek the justice they so rightly deserve.”
Solicitor Ciara McPhillips at Michael Boylan Litigation represents the families.
“As with all cases of this nature, I hope to achieve sufficient compensation to ensure Joshua’s needs are met for the remainder of his life, which should give his mother some comfort that when the day comes that she is not able to care for him, that he will be properly looked after," she said.
"I also hope to obtain an acknowledgment of responsibility from the defendant, an acknowledgement that mistakes were made and Joshua need not have been injured.”