Karen Keely’s first two sons were diagnosed with different conditions. Harry was diagnosed shortly after birth with global development delay and cerebral palsy. Her second son Lee had poor social skills, speech and language problems and difficulty controlling his temper.
But it was when she gave birth to her third son, Lorcan, and she realised his facial features were incredibly similar to those of her eldest boy, she “knew something was wrong”.
Lorcan wasn’t meeting his developmental milestones. After undergoing genetic testing when he was 18 months old, Ms Keely was asked if she was ever on a drug called sodium valproate.
She said no, but when she was told it is also known by the name Epilim, she was devastated. She had been taking the anti-epilepsy drug since she was a young child. She said she was never fully advised of the risks of taking Epilim during pregnancy
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All her children have been diagnosed with fetal valproate syndrome, a rare congenital disorder caused by their exposure to valproic acid while she was pregnant with them.
“I have always blamed myself. It’s like you’re grieving for them constantly. There’s not a birthday that goes by that I don’t cry,” she said.
Lorcan and Harry will require full care for the rest of their lives, while Lee is diagnosed with Asperger syndrome. The children are now aged been 37 and 25.
The news that a chairwoman has been appointed to lead the inquiry into licensing and use of sodium valproate among women of child-bearing potential has left her “elated”, after 10 years of campaigning.
“I felt like ‘oh my god’, I’m here. It’s actually happening and what happened wasn’t my fault.”
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