At the age of 12, Deborah Mann was involved in a bus accident that would change the course of her life forever.
Having a major seizure, Deborah says she was found “blue in the face” and had to be resuscitated. Although her seizures were difficult to control, she was diagnosed with epilepsy and was admitted to a specialist hospital at the age of 18.
Still struggling to control her seizures, the now 61-year-old was put on epilepsy drug, sodium valproate for the “time being”. However, Deborah says some of the doctors at the time weren’t a fan of the drug, whilst others advocated its use for those living with epilepsy.
Starting on 500mg, the mum-of-two had her dosage increased gradually. During this time, Deborah lost babies, one through a late miscarriage in her twenties, before falling pregnant with her eldest daughter in 1994.
“My pregnancy was really doolally,” Deborah told LancsLive. “Everything went wrong and because I was hospitalised, I was pretty much kept on the straight and narrow but things were not going right.
Deborah’s two daughters
(Image: Deborah Mann)
“My husband actually left me at that point, whilst I was pregnant and in hospital, which is probably why things went a bit doolally emotionally. They originally said I had gestational diabetes but I’ve since been diagnosed with Graves’ disease and I suspect it was that, because I was an emotional rollercoaster during my pregnancy.”
Deborah was on 4,500mg of sodium valproate at this time, but after having a grand mal seizure, her dosage was upped to 5,000mg. Importantly, the mum says this increase in dose occurred without her knowledge or consent.
“I had been warned sodium valproate could cause birth defects, so it wasn’t that I hadn’t not been told,” Deborah added. “But I hadn’t been told that I was on a super high dose.
“I have spoken to UKTIS and they interact with all the teratogenic services in the world. They had never heard of someone else being given 5,000mg so even though I knew there was a risk, the doctor actually said it won’t happen to you.”
Being kept in the dark for much of her pregnancy, it was when her daughter was born that Deborah knew something was amiss straight away. “It was all pretty obvious,” Deborah explained.
“The health visitor flagged things as well, you see she had two holes in her heart. I don’t know if it has anything to do with the epilepsy but they were telling me how to feed my daughter and she was having real problems.
“Anyone that came to visit me, the nurses, would say there’s definitely something wrong with that baby. Then when I was leaving, I was bathing her for the last time and the next thing I knew, we were off to the hospital where they found two holes in her heart, but these spontaneously closed – they didn’t understand how that happened.”
Having gone through the trauma of her first marital split and health complications, Deborah met someone else and fell pregnant again, but only found out four months in. Despite the shock pregnancy after being on contraception and taking other methods, her youngest daughter Branwin was born in 1995 at 34 weeks.
“During my pregnancy with her, there was a programme on Watchdog and they covered Sodium Valproate,” Deborah said. “They did a full episode on it and that would have been around the 1994-95 period.
“I saw my pediatrician that week and turned around and asked, does my daughter have Fetal Valproate Syndrome? She said yes, but of course nobody had told me.
“My second daughter, Branwin, she was diagnosed from birth.”
Fetal Valproate Syndrome is diagnosed to children affected by the taking of sodium valproate in pregnancy. 10% are at risk of birth defects and 40% with problems and development as they grow up.
Problems can include delays in walking talking, poor speech and language skills, memory problems and lower intelligence than children of the same age, according to the Epilepsy Society. But for the reality of many families, these symptoms only scratch the surface.
“My eldest daughter has severe hearing loss,” Deborah continued. “Because of her level of disability, she did get payment but that’s for her to help with her social interactions.
“Because of the medical situation around her ears, she has Chronic Bilateral Cholesteatoma – she’s had 13 operations and they’re talking about a 14th. It’s scary with Cholesteatoma because they have to remove bone every time they operate and it goes on until the bone is removed and the brain is exposed, so then that person is at risk of a brain infection and it’s quite common for people to die.”
Deborah has been working with other parents in raising awareness over the affects that taking sodium valproate has had on their families. Working with Karen Buck, she is part of Karen’s group On the Road to Justice.
A number of different families grouped together to try and address the matter with the government. In November, three families travelled to London to hand over a petition and letters to Number 10.
As a result, they hope for recognition from the new Labour government and for redress over what has happened to them.
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