Couples living with epilepsy have an often-heartbreaking decision to make: Whether or not to try to have a child. Ten percent of children born to mothers who have epilepsy inherit their epilepsy; similarly, eight percent of those born to fathers with epilepsy also have the condition. And if it’s the mother who has epilepsy, the choice to continue with AEDs while pregnant is a frightening one. To varying degrees, meds can cause learning disabilities and birth defects, but seizures also can hurt a fetus. Two wracking conundrums, to say the least.
My husband and I desperately wanted a child, but it came down to how we looked at the statistics. Was the glass half empty or half full?
I grew up looking at the dark side of things. Never, before I hit about 30, would I have taken such a risk. Just think! Since then, I’ve slowly turned around my fundamental thinking. Just as there would be a 10% chance of my having a baby with epilepsy, there was a 90% chance that I wouldn’t. Some rational people might find it too risky, but I'm one who liked those odds. Furthermore, with the help of meds, I’ve lived a very productive life, and the stigma associated with epilepsy, in general, is declining. If my child were to have epilepsy, it would be likely he or she wouldn’t suffer the same shame I felt. My husband agreed.
Then there were the meds and whether or not I should try living without them for nine month. As with all choices about your health, here's where working with your doctor and good information are key. Different types of AEDs have varying levels and types of potential defects associated with them, spanning skin tabs to spina bifida, distractibility to serious learning issues . When I was 42, soon after we decided to go for pregnancy after having tried and failed before, I met with a high-risk obstetrician at Massachusetts General Hospital. Soon thereafter, I had a seizure, ended up in the ER, and was attended to by my wonderful epileptologist, Dr. Andrew Cole. He thought he might try changing at least one of my meds (Tegretol and Lamictal) to Depakote. Looking in my chart, he stopped short, seeing that I had seen this specialist. Among AEDs, Depakote bears a particularly high risk for birth defects. Mine, though also having potentially harmful effects on a fetus, weren’t as bad. He didn’t change anything. Thank God, again and again. I stuck with my meds, completing a seizure-free pregnancy and giving birth to a son, Cole, who shows no signs of epilepsy.
With one day until his 17th birthday, I can say that he shows no signs of epilepsy or noticeable birth defects – though, admittedly, I don’t know if his ADHD might have something to do with my epilepsy or meds. Nonetheless, with help, he has learned to tame the beast and (excuse a mother’s pride) is a kind, bright, articulate, and happy young man. That said, I was 18 when I had my first petit mal, and I know there’s no guarantee that Cole will lead a seizure-free life. Then again, one in twenty-six will encounter epilepsy at some time in their life, is there a guarantee for anyone? I’m grateful for Cole and all his life is, and it does no good to worry when there’s a 90% chance that he is only a “typical” person.
But that’s us. We chose to move forward with my pregnancy and meds. With doctors’ help, everyone has to make their own decisions with varying degrees of risk in their specific cases. I thank God every day that we’re those among the 90%. And I thank God for Dr. Cole and his decision to avoid Depakote. If you have to choose whether or not to have a baby, get the best epileptologist you can to help you understand the risks and ameliorate them as much as possible. And if something about the advice bothers you, get a second opinion. Bring your obstetrician into the discussion and set your sights on coming to peace with the choice you make.