For over a decade, Karen Buck was left in the dark.
After having her first child at the age of 16 in 1988, the mum-of-four had no idea her baby was suffering with birth defects that were a side effect of medication she had been told was safe by medical professionals. And she wouldn’t find out for many years later.
At the age of 12, Karen suffered with childhood trauma after her parents’ relationship broke down. At such a young age, 53-year-old Karen experienced a significant seizure, but at the time, “no one knew what was going on” as she describes it as sudden and unexpected.
“I just fell to the ground and I literally nearly died,” Karen from Middlesex told LancsLive. “I was in it for quite some time – I was convulsing, shaking and froth was coming out of my mouth. I just stopped breathing.”
She says her personal life took a toll on her and she was diagnosed with epilepsy. Initially, she was put on a few different types of tablets until she found the one that best suited her – Epilim, a brand of the epilepsy drug sodium valproate.
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Taking the drug since her diagnosis at the age of 12, Karen fell pregnant four years later in 1988. During this time, she was on a dose of 800mg of Epilim and had no idea about the side effects the drug would cause. “I was none the wiser,” Karen explained.
“I was going about my business. I thought she was fine, the doctors didn’t tell me anything. No one picked up on anything at all. I thought she looked normal, she acted normal and everything.
Karen has been a single mum since the age of 16
(Image: Karen Buck)
“I knew she had little hands, but I just assumed this was normal. She did asthma, she had asthma really bad and we nearly lost her, but they put that down to the pollution. Nobody picked up on it.”
Not realising anything was amiss, Karen went on to have another, a boy, in 1990. During her pregnancy, she began to have more seizures and was put on a 1,000mg dosage of Epilim.
“We noticed that his situation was a bit more apparent, but no one linked that with the drug – I didn’t link that with the drug either,” Karen said. “I was none the wiser myself about this drug, it wasn’t out there in the public at all.
“My son, he’s dyslexic and he was isolated from all his peers in school, he was having a lot of trouble in school, even from the teachers as well as the children. Life became very difficult in schooling for him.
“It wasn’t until my third child and my first two children became older, that it became more apparent they had certain things wrong with them. My first daughter has polycystic ovaries, has more of the male hormone and has a spinal condition where a couple of her discs are out of place.
“With my son, he’s got a twisted oesophagus, he’s got a hernia, he’s dyslexic and suffers with mental health issues, with depression and everything. A lot of these weren’t discovered until he went to the hospital with his hernia and they couldn’t get the camera down because of his twisted oesophagus.”
The effects of taking sodium valproate during pregnancy have since been more understood, with affected children diagnosed with Foetal Valproate Spectrum Disorder. As the children grow up, development is affected by the drug, including learning difficulties and physical abnormalities such as small fingers and toes, cleft palate and spina bifida.
Children can also experience delayed walking and talking, poor speech and language skills, memory problems and lower intelligence than other children of the same age, according to the Epilepsy Society.
Karen’s daughter Bridget
(Image: Karen Buck)
Unbeknownst to her, Karen fell pregnant again with her third and fourth child in 1998 and 2001. She was unaware she was pregnant as the Epilim stopped her periods, but she had to overcome other obstacles too.
In 1998, Karen was suffering with a lot of pain and initially, was diagnosed with a tumour. However, beyond inspection, it was discovered that she was pregnant with her third child, Bridget.
At this time, her medication had been increased to 1,400mg of Epilim which she took twice a day. “I was on such a toxic dose that at six months pregnant, I then found out,” Karen explained.
“Basically, I was holding a baby that I thought was normal but I was told the most stressful thing any mother could face. At a very young age, I was told I was actually having a baby with spina bifida and hydrocephalus and that it was a little girl.
“They asked, what do you want to do? Have an abortion? I was a young mum with no family and to be asked that with no other options, I didn’t know what they were and I just burst out crying.
“To be told such an ordeal like that and all the doctors were looking at me. They took me in to a room like a prison cell, it was all blue and white and not to be offered a cup of tea or anything.”
Karen then made the decision to ask for a referral to a different hospital where she was explained about the conditions her baby had in more detail. After understanding the conditions, the mum decided to keep her baby, but the struggles didn’t end there.
“I haven’t really had any help,” Karen added. “I’ve had to go through all of this and life as a single parent trying to get justice.
“My daughter has nearly died several times through doctors overdosing my daughter with drugs and she’s been in hospital fighting for her life I’ve even had to go through cancer and fight for my own life, it’s been such a stressful time.”
Having gone through a significant amount of trauma and stress, Karen decided to take herself off Epilim after the birth of her final child, stating the affect it’s had on her family. Now, she’s fighting for herself and other families too.
Karen added: “We need justice and we need compensation. We didn’t ask for our children to be harmed by a medicine – we were told to take this medication to benefit us and we listened to the doctors.
“We put our trust into these doctors. I was under the understanding, when I took this medication and asked the doctors clearly, will I be protecting my child?
Karen set up the group On the Road to Justice
(Image: Karen Buck)
“He said, you’re doing the right thing. We’re giving you this medication to stop you from having a seizure and if you don’t you’ll end up killing your child – they were their exact words.
“Instead what they’ve done is they’ve ended up taking my life because I’ve not been able to go out and go to work, bring an income into my home to look after my children. I am a mother, I am a carer, I am a provider for my children.
“I have to do my daughter’s care, give her medication, wash her and clothe her. I have to give her everything. I have to catharise her every three hours and wake up in the night, making sure she doesn’t swallow her saliva and choke on it.”
As a result of her experiences, Karen decided to set up the group On the Road to Justice to help other families who have had their children affected by sodium valproate. “I was at home studying because I’m a safeguarding counsellor,” Karen explained.
“I was at home and all of a sudden, Bridget got very very poorly. She got so sick I had to rush her into hospital and she was on life support and doctors revealed she’d have to pull the plug on her machine, she was 19 at the time.
“They explained all her organs were shutting down and that’s when I set up On the Road to Justice, for my little girl.”
Swearing she’d get justice for her daughter who is brain damaged and the most affected child from the drug, Karen has grouped together a number of different families 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’s happened to them.
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