"If Only I'd Known about Depakote Birth Defects"

Tucson, AZ"If I had known that Depakote causes birth defects, I would never have gotten pregnant," says Kathy. She knows it is too late to file a Depakote lawsuit, but welcomes this opportunity to "get the word out" regarding Depakote side effects.

Kathy, who has epilepsy, had a healthy son and soon after he was born, she started taking Depakote. A few years later she had a daughter—let's call her Linda. "I had a few sonograms but they didn't show that she had any birth defects," says Kathy.

Linda, age 25, was born with spina bifida—an opening in her spine. (According to one study, babies who were exposed to Depakote during the first trimester had 12 times the risk of being born with spina bifida than babies not exposed to the medication.) Consequently Linda has spent a good deal of her life in terrible pain and has suffered countless surgeries, and Kathy firmly believes that Depakote is to blame.

"As soon as Linda was born she was air-lifted to Stanford University hospital to have her spine closed," says Kathy. We spent the next few weeks with her in intensive care; she had a shunt in her head—cerebral spinal fluid backed up—which is common with this kind of surgery. (She still has a shunt, although not that initial one.) For years the shunt caused her awful pain—terrible headaches and projectile vomiting when the shunts malfunctioned.

"Spina bifida also causes lack of bowel and bladder control because the opening was at L4 and L5. To this day, Linda has to catheter herself four times a day. She was three years old when she learned to do it herself; she never got out of diapers until high school and she always has to wear a pad. She also gets lots of bladder infections…

"Because the nerve endings were exposed when she was born, it caused a huge array of issues. She is paralyzed from her knees down, and she doesn't have any muscle tone, especially in her butt. She has worn braces on her lower legs—they look like ski boots—all her life.

"Linda has had multiple surgeries, from the shunts in her head to back surgery. At one point the degree of mobility she did have was being lost, so the surgeons opened her back again and un-tethered the spine from scar tissue.

"Around age five her tendons were cut and released because her toes were facing up and inward; now her toes just hang there—she doesn't have any musculature. Then a peg was put into the side of her ankle—I don't even remember the reason for that surgery.

"Around 6th grade, she developed a high degree of scoliosis. Her back was 60 percent out of whack: the doctors implanted titanium rods and that straightened her out somewhat, but in high school the rods started poking her and you could see the spot at her neck. Again, she was in terrible pain so she had them taken out.

"When Linda was young, I read an article that said Depakote and other epilepsy meds can cause a deficiency of folic acid by interfering with the way it's absorbed. No one ever told me to take a high dose of folic acid during my pregnancy."

(According to epilepsy.com, the vitamin folic acid (also known as folate) is important in the production of blood cells and may be important for some nerves. The babies of women who don't get enough of it in the early stages of pregnancy are more likely to have birth defects, especially a type called neural tube defects, which affect the brain and spinal cord. The best known of these is spina bifida, in which the spinal column is not completely closed. By the time a woman knows for sure that she is pregnant, it is probably too late to prevent these defects, so the safest course is for young women to take enough folic acid all the time.)

"I always worried that my medication was going to be an issue, but my neurologist said that taking Depakote was a lesser risk than having an epileptic seizure.

"I know for a fact that I wouldn't have taken Depakote had I known about Depakote birth defects. Once Linda was born, I wasn't going to have another child.

"I have to say that my daughter is an amazing young woman; she has decided that there is pretty much nothing wrong with her, even though she had a surgery in her senior year of high school that pinched off nerves in her neck; she was in a wheelchair until that time. Linda just got a certificate as a teacher's aid and is doing much more than I ever thought she could do.

"Surgeons and doctors really don't want to speak about Depakote. They don't want to presume that they know something and don't want to put a prescribing doctor in front of a medical malpractice board. But when it comes to the Depakote manufacturer, that's another matter. I don't know how long ago they discovered the connection between Depakote and spina bifida; I certainly wasn't told, but they have to tell people now. "