Deborah's Story

I was given sodium valproate and had five children whilst taking this. One died as a late miscarriage, two were neonatal deaths and two are disabled. I took sodium valproate for epilepsy for over 15 years at 5000 mg a day (yes a high dose). I was told that there would be no more than a 12% likelihood of my child having spina bifida. Today I know that there is a 37% chance of having a child with special needs, however if you have a child with special needs there is a 55% chance of having a second child with disabilities. Those with a genetic leaning towards mitochondria dysfunction have guidance not to take this medicine. When you take an epilepsy medicine that works for you, whatever the side effects it is terrifying to change as a seizure is a terrifying experience. Yet the figures are high when it comes to the potential of having a child with special needs whilst using sodium valproate. I was never informed of the risks, I was not even aware that I was on a high dose. Today, move than 20 years later I am left angry as I have found that much of this information was around before I was ever pregnant, but somehow it has been lost in translation and not filtered down to those that need to know. I hope that the powers that be explore this area further, when the knowledge is there, it is essential that it is utilized in order to prevent some of the tragedies that I see, I know so many mothers in my situation facing the impossible. The mothers that take this are epileptics, those with bi-polar disorder, nerve pain and migraine to mention just a few of the conditions that sodium valproate is prescribed for. These mothers are disabled, and appear to deteriorate over time. These mothers are caring for children who have physical, cognitive, and mental health issues. In turn there are times when these children themselves need to be a carer, such as when their mother has a seizure in front of them, or are in chronic pain. For more information that can help you learn more, visit Organisation for Anti-Convulsant Syndromes