Tomas Cozens, a 25-year-old from the UK living with several disabilities. These difficulties are all the result of sodium valproate, an epilepsy drug his mother was prescribed during pregnancy. This drug has been a miracle for thousands of patients. For expectant mothers, it was released without proper warnings about the probable risks it posed to their unborn children. Tomas on his first birthday, Tomas was born with multiple severe disabilities. He has some major diagnoses areas such as high-functioning autism, generalized social anxiety disorder, global developmental delay (GDD), and social communication disorder.
Tomas’s mother, Jo Cozens, has made a vigorous effort. Since then, she has campaigned tirelessly to ensure that the UK government is held to account for its use of sodium valproate. She is not alone in her fight; thousands of mothers who have similarly been affected by the drug are demanding answers and recognition for the guilt they feel over their children’s conditions. Jo’s campaign highlights the important role healthcare providers play. They need to put in place safety measures to ensure that patients are warned before prescribing sodium valproate without adequate warnings.
So even though these risks of sodium valproate are well known, it continues to be a first-line anti-seizure medicine offered to people with epilepsy. As a result of increasing alarm from the public and scientific community health, officials have taken unprecedented steps to protect unborn children. These restrictions prevent women of childbearing age from accessing safe and effective reproductive healthcare. They need annual specialist visits while on this medication.
Jo Cozens shared how the emotional burden this reality has placed on her and other moms.
“You know, you can never forgive yourself. Because the medicine you took has harmed your baby,” – Jo Cozens
It is a fight Tomas has to endure every day as he faces his own disabilities, requiring multiple surgeries over the course of his life. Even in social and educational environments, he’s presented with huge barriers as he struggles with mental health and communication challenges. While he’s learned to adapt to all of these challenges, Brian describes being frustrated with the lack of support.
“I’ve received absolutely no financial aid for the problems growing up and still now for my future, absolutely nothing,” – Tomas Cozens
Tomas’s experiences may be unique, but they reflect the legacy of sodium valproate and its wider impact. He opened up about his struggle to integrate back into everyday life, explaining,
“I have to struggle, I have to try to earn, to try to learn. Even though I’m a little bit slower, probably a lot slower,” – Tomas Cozens
Tomas bears that emotional load in vivid detail. His mother and other parents in the same position have to bear that burden too. Becci Smart, another advocate in this tight-knit community, stressed the need to hold their powerful health authorities accountable.
“Someone has to hold their hands up and say we take responsibility for this,” – Becci Smart
She pointed out that lack of recognition contributes to the suffering of families targeted by the epidemic.
“All the time someone’s not doing that, we as parents are living with that guilt – and it’s silly because it’s not our guilt to live with,” – Becci Smart
Jo Cozens shared her complicated feelings at learning her son had recently been diagnosed. She was relieved, but the news gave her profound grief.
“It was nice to put some form of a label on it and have somebody finally acknowledge it, but then it really upset me to the core,” – Jo Cozens
We understand that the emotional toll from these situations can be very heavy. Jo shared one story about a really low point where she was totally hopeless.
“I felt as though I was going to crawl into a ball and just never stop crying,” – Jo Cozens
She went on to explain to us the experience of many parents, as they face health professionals mentioning sodium valproate without discussing tangible options.
“All the doctors will sit there go ‘well you took sodium valproate, what do you want us to do’?” – Jo Cozens
And as advocacy has broadened, the demand for an accountability solution has increased, led by families harmed by sodium valproate. The road to recognition and accountability is still emotionally rocky for many mothers, such as Jo Cozens. Like all of us, they are looking for answers that will lead them to their own sense of peace. They too continue to battle on behalf of their children, who are still dealing with disabilities inflicted by this drug.
