To Take or Not to Take Depakote: A Mother’s Agonizing Decision

Philadelphia, MSJoanie had a tough decision: stay on Depakote and risk Depakote birth defects or stop the antiepileptic drug and risk seizures. She took her doctor’s advice and has lived with guilt for more than a decade.

When Joanie found out she was pregnant in August 2003, the first thing she did was ask her doctor about Depakote risks. “I have a bad allergic reaction to other seizure meds, and almost died when I was a teenager because the drug I was taking shut my liver down, so I had to take Depakote,” Joanie explains. “I think this is the main reason why my doctor advised me to stay on it.

“My partner and I were happy that we were going to have a baby. We got married in December and that was the month we found out about Depakote birth defects. I had no idea about the serious risks involved.”

And in December, when she was four months pregnant, Joanie had a sonogram. It confirmed the worst: her baby had a neural tube defect (NTDs), a serious congenital defect of the central nervous system and one of the most common severely disabling birth defects. And NTDs, such as spina bifida, have been linked to Depakote.

After Depakote came into the marketplace, the risk of neural tube defects increased, from 1 in 100 children to about 1 in 20. Further, the main factor for giving birth to a child with NTD is a family history of a previous pregnancy that resulted in an NTD. This was Joanie’s first child, and after she stopped taking Depakote, she gave birth to two healthy sons, ages seven and nine.

Joanie had another terrible decision to make. If she carried the baby to full term, he would only live for about an hour.

“My father is very religious and he wouldn’t accept the fact that anything could be wrong, even with the sonogram,” says Joanie, crying. “We are really close but I disagreed with him. He said, ‘I would have to see it to believe it.’ Because I was so far along, we didn’t know what to do, to go full term or abort…

“I was induced on January 23, 2004. Our families got to meet our son, John Dylan, and we were able to hold him as long as we wanted to. He never did breathe, he died during birth. Holding your son in your arms and knowing that you won’t be carrying your child home with you was the hardest thing ever.”

Joanie and her family held a funeral for John Dylan. She says that, had she known her son would be born with Depakote birth defects, she would never have taken the drug, even though having a seizure during her pregnancy and possibly during birth would be very dangerous.

“I feel guilty even though I know it isn’t my fault or my doctor’s fault,” Joanie says.

Her meds were changed (to Topamax) right after her son passed away and she has no idea why she wasn’t switched earlier.

“I got pregnant right after I had John Dylan, and right after I stopped taking Depakote,” she adds. “I took Topamax during both pregnancies and both my boys are fine. I haven’t taken any other meds so we believe John Dylan would be alive today if I stopped taking Depakote.”