‘I couldn’t shake the guilt I felt because my medication robbed my daughter of so much’
The moment she gave birth to her first, longed-for baby, Caroline McKerrow realised something was wrong.
Diagnosed with severe epilepsy when she was just three, Caroline had been required to take strong medication to control her seizures but she and husband Charlie, from Kilmarnock, had looked forward to starting a family.
She said: “We both loved children and wanted a family of our own. Before we started trying for a baby we did the responsible thing and we both attended our GP to ask if it was safe as I knew I was on a strong dose of sodium valproate.
“We were so relieved when we were assured there would be nothing to worry about.
“I was overjoyed when I became pregnant at 19. We could not believe our luck that we were going to be parents.
“But the moment I looked at my baby daughter, I could see immediately that something was very wrong.
“Claire had webbed feet and toes, and her fingers were oddly shaped. But there were other things that I sensed were wrong, although they were not as obvious.
“Claire had curvature of the spine and terrible difficulties feeding, bringing up her food and crying all the time.
“Despite the reassurances our GP had given us, I could not drop the fear that my epilepsy medication had something to do with the way Claire was.”
Caroline said: “As she began growing, Charlie and I took Claire the length and breadth of Scotland to see experts. She developed epilepsy.
“All the experts we saw were evasive. It was frustrating, but we refused to give up asking questions. I used to sit and watch Claire with tears flowing down my face as I struggled to try and overcome the guilt. I could not shake the suspicion that my epilepsy medication was to blame.”
It would be 18 years before Caroline, 58, and Charlie, 61, finally got the truth – the birth defects were as a result of the sodium valproate medication she had been taking to control her seizures. Caroline said: “To this day, I can’t shake the guilt I feel because my medication robbed my daughter of so much.
“We have lost count of the number of surgeries and procedures she was forced to endure to correct the birth defects she was left with, losing so much of her childhood to a constant round of hospitals and medical experts.
“One of the saddest things of all has just recently been revealed. Claire won’t ever be able to have a family of her own. I’m heartbroken for her, for all of us.”
Charlie said: “Despite everything she has had to face, we are so proud of Claire and what she has achieved, first at school, then college. She overcame every obstacle to get to mainstream school, and she worked so hard with her studies.
“Claire may have been unsteady on her feet because of her physical defects, but in the water, she swam like a fish and took home countless gold medals and trophies. At one time we even thought she would swim for her country at competition level.
“There were times of great sadness and worry too. It broke us watching Claire stand at the window for hours on end staring at the other kids playing in the street, knowing she was unable to join them.
“So many of the operations she was forced to go through were extremely painful too. We would have done anything to take that pain from her.”
The couple took a decision to defy doctors and Caroline came off sodium valproate before conceiving their two sons.
Caroline said: “We should have been given the correct guidance and informed about the high risk of birth defects caused by sodium valproate. But we were never given that choice. I’m so angry that those who should have protected us, failed to pass on the dangers of sodium valproate, despite experts knowing about the devastating consequences for over 50 years.
“I’m also furious at the battery of clinicians and experts who saw us over the years and repeatedly tried to gaslight us and hide the truth. It should never have taken 18 years for us to get a proper diagnosis.
“It horrifies me that women of child bearing age are still being given Sodium Valproate, despite the overwhelming evidence of the harm it has caused to well over 20,0000 babies in the UK.”
“It has been two years since the Cumberlege Review, and little or nothing has been done to even begin acting on the vital recommendations she made. That is simply unacceptable.
“We relied on our governments to keep us all safe, but they failed us spectacularly and are still failing us. They must now set aside substantial funding for redress, and ensure the drug companies at the heart of this medical disaster are forced to contribute and live up to their responsibilities without delay.”