The Mothers Fighting a Scandal Bigger Than Thalidomide: ‘We Were Told the Medication Was Safe’

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From The Guardian: “In 2009, Emma Murphy took a phone call from her sister that changed her life. ‘At first, I couldn’t make out what she was saying; she was crying so much,’ Murphy says. ‘All I could hear was “Epilim.”‘ This was a brand name for sodium valproate, the medication Murphy had been taking since she was 12 to manage her epilepsy.

Her sister explained that a woman on the local news had claimed that taking the drug during her pregnancies had harmed her children. She was appealing for other women who might have experienced this to come forward.

Murphy found the news segment that evening and watched it. ‘I was just stunned,’ she says. ‘Watching that, I knew. I knew there and then that my children had been affected.’

At that point, Murphy was a mother to five children, all under six, and married to Joe, a taxi driver in Manchester. ‘My kids are fabulous, all of them, but I’d known for years that something was wrong,’ she says. ‘They weren’t meeting milestones. There was delayed speech, slowness to crawl, not walking. There was a lot of drooling – that was really apparent. They were poorly, with constant infections. I was always at the doctors with one of them.

‘I knew there was something wrong and I’d say it to doctors, to friends, to family, but no one was listening. I was told: “It’s a phase.” “You’re reading too much into things.” “You’re depressed.”‘ At times, she had wondered if her medication was to blame. ‘Everyone knows about thalidomide, but then I’d think: there’s no way. It can’t be. I’ve been told so many times – by midwives, by doctors, by consultants – over so many years that it was safe to keep taking.’ By the time Murphy saw the news item, one of her children, Lauren, had been diagnosed with cerebral palsy.

‘It was 10 at night, but I called the news station straight away and asked for this woman’s number,’ says Murphy. ‘I knew I should wait until morning, but I couldn’t. Janet answered the phone and we talked for two hours.’ At this point, Murphy wells up and has to pause. Then she says simply: ‘She saved my life.’

This call between Murphy and Janet Williams was the start of an incredible partnership. It led to the report published this month by England’s patient safety commissioner, Dr Henrietta Hughes, which recommended a compensation scheme for families of children harmed by valproate taken in pregnancy. Hughes has suggested initial payments of £100,000 and described the damage caused by the drug as ‘a bigger scandal than thalidomide.’ It is estimated that 20,000 British children have been exposed to the drug while in the womb.”

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