Mums v Big Pharma – the Kettering family with three children disabled by prescribed sodium valproate

The mother, who wishes to remain anonymous to protect her now-grown-up children, was told the drug sodium valprorate was safe for her unborn babies when childhood absence seizures returned during her first three pregnancies.

Her two youngest children have not been affected, but their older three siblings have a range of conditions and disabilities.

Despite two damning reports published reviewing the drug’s use, the mum now wants further action including financial redress.

She said: “Seizures I used to have when I’d been much younger came back when I was pregnant. I wasn’t already on the drug but I was referred to a neurologist who prescribed it.

“All three of my first pregnancies I was given the drug, I was told when I was given it ‘you are past the danger limit’.”

The mum says she knew something ‘wasn’t right’ with her eldest when he started nursery when he was two and a half years old.

She said: “He didn’t mix with other children. He had horrendous sleep patterns, never settled. He was always poorly. I was told I was neurotic – they said ‘try Indian head massage’.”

All three sons were eventually diagnosed with Foetal Valproate Spectrum Disorder (FVSD) encompassing autism spectrum disorder, ADHD, dyslexia, dyspraxia, learning disabilities, severe anxiety and depression and mental health issues.

The family had to push medics for referral to genetics testing to get a diagnosis and rule out other factors – they were only given an official FVSD diagnosis when the boys were in their 20s.

They have found accessing social care services ‘very difficult’ with the couple having to sacrifice careers and holidays.

She said: “My husband has not taken promotions, concentrating on home rather than business, so he can be at home to support us.

“I had to give up work which has reduced pensions and savings, our ability to go places or take part in activities. I need to be around 24/7. We haven’t been away on holiday for over 10 years.

“My second eldest will always be at home. There’s no-one else to help, there’s nobody to help – it’s back on the parents. There’s only so much we can do.

“It takes its toll on your body.”

Over the years the parents have had to deal with their children’s self harm, suicidal ideation, verbal and physical aggression and destruction of their home.

They paid for additional tuition to help with learning as well as having to deal with school exclusions.

FVSD has had a massive effect on their physical health, with all three having ENT issues and surgery and dental issues. One has sleep apnoea and another is going through assessment for similar issues. They also have bowel issues in the form of IBS, deteriorating balance and muscle issues. One has had spinal surgery.

Taking medication has had side effects including kidney stones and weight gain.

All three have tried the workplace but with limited success. One is currently settled and doing ‘OK’ with a company which is ASD friendly. The other two have tried working but it’s ‘fallen apart’. Their younger unaffected siblings are flourishing in their careers.

Members of two sodium valproate related groups – FACSA (Fetal Anti Convulsant Syndrome Association) and INFACT (Independent Fetal Anti-Convulsant Trust) – the family hopes the Mums v Big Pharma programme will bring pressure on the government to create a compensation scheme.

She added: “Our whole family has made sacrifices. The siblings have had to put up with a lot. I do worry what is going to happen when we’re gone.

“It’s bad enough when you have one SEND child, let alone three. We now have grandchildren. It could affect them too… there are studies and monitoring going in for this but there is some proof to show that FVSD is passed on. We need redress so they are cared for.

“We urge people to watch this and if you think your family may have been affected please get checked out by your GP and ask questions.”

Mums v Big Pharma is on BBC Two on Monday, November 9, at 9pm and on available to view on iPlayer.