Epilepsy rarely becomes barrier to pregnancy

PORTLAND – For years, many doctors warned epileptic women not to get pregnant.

A pregnancy might hurt the mother or injure the child, they said. Some doctors told expectant mothers with epilepsy to get abortions.

Those fears were wildly overblown. Research, experience and thousands of healthy newborns have dramatically changed thinking about pregnancy and epilepsy in recent years.

While women with seizure disorders do face some risks, with planning, the vast majority – more than 90 percent – have perfectly healthy pregnancies and babies.

“You have to plan it and manage it,” said Dr. Mark Yerby, a Portland neurologist whose research involves epilepsy and pregnancy. But “epilepsy isn’t, in and of itself, an obstacle to having a baby.”

In fact, while babies born to epileptic mothers have more birth defects, some doctors think the disease is not the cause.

“It’s the drug that is the problem. It’s not the mother’s underlying epilepsy,” said Dr. Lewis Holmes, an expert in birth defects at Massachusetts General Hospital.

That idea is controversial because few patients can safely stop using seizure-control drugs. But Holmes, director of the national Antiepileptic Drug Pregnancy Registry, and others are working to discover which drugs are safest for pregnant women and nursing mothers.

Those are pressing questions because about 1 percent of the U.S. population has epilepsy, or roughly 3 million people. If epileptic mothers gave birth at the national rate, there would be tens of thousands of children born to them each year.

But epileptic women seem to have one-quarter to one-third that number of children – although good statistics on the subject are scarce. Those numbers may sustain long-standing beliefs that epilepsy and pregnancy don’t mix.

Yerby, a national epilepsy expert at Providence St. Vincent Medical Center, thinks those statistics may reflect difficulties conceiving more than problems during pregnancy or delivery.

Seizures and hormones seem to interact in a complicated way that doctors don’t fully understand. Some women notice seizures hitting at certain times during their menstrual cycles, for instance. Others notice changes during puberty or menopause. Birth control pills also fail more often in epileptic women, Yerby said.

And women with epilepsy also have more menstrual cycles in which no egg is released to be fertilized, he said. His theory is that seizures may interfere with gonadotropin-releasing hormone, a chemical messenger made in the brain that starts a chain of events that ends with the ovaries releasing mature eggs. He is working with hormone experts to figure out a way to study that theory.

Epileptic women who do conceive definitely face some special risks.

One-quarter to one-third of epileptic women will have an increase in seizures during their pregnancy, according to the nonprofit Epilepsy Foundation, based in Landover, Md. Those seizures increase the risk for problems, including injuries to the mother, developmental delays in the child and miscarriages, Yerby said.

At the end of pregnancy, women with epilepsy also seem to have higher rates of early deliveries and Caesarean sections.

And for many women considering motherhood, their children’s health remains the biggest concern. Yerby said many studies show that about 4 percent of children born to epileptic mothers have significant birth defects. Holmes said that is about twice the average U.S. rate, where one newborn in 50 has a “major malformation.”

The good news is that doctors and patients can work together to limit and plan for many of those problems. For instance, Holmes said, women using more than one seizure-control drug clearly have a higher risk of birth defects. So women should work with their neurologists to make sure their seizures are well-controlled with a low dose of one drug before conceiving, Yerby said.

Epileptic women should continue to work closely with their neurologists, as well as their obstetricians, throughout pregnancy, Yerby said. Those doctors may order extra ultrasounds or blood tests to check for possible birth defects or to ensure women are getting proper levels of seizure drugs.

Researchers are continuing to study which drugs are the safest. Holmes’ group is enrolling as many women with epilepsy as possible in a study that tracks which drugs they use and how their pregnancies turn out. The study has already linked several common seizure drugs, including phenobarbital and valproic acid, to a significant increase in birth defects. The group is working to get similar information on more than 20 other drugs, including popular new medications.

That work could address what Yerby called a chief frustration among doctors: While they know some seizure drugs are risky, “we still aren’t able to tell you which medicines are safest.”

Holmes’ group also hopes to contact epileptic women whose children are 3 or older, to check on the children’s development. Whether normal-seeming newborns might have subtle, delayed effects on intelligence or growth “is the big unanswered question” about seizure drugs, he said.

In Portland, Yerby hopes to launch a study checking for levels of anti-seizure drugs in breast milk. New mothers frequently ask him about breast-feeding and seizure drugs, but proven answers are in short supply.

Yerby hopes to test milk from a few new mothers on anti-seizure drugs, then apply for a federal grant to expand the study if the results look interesting.

Yerby is also hoping some women monitored in Providence’s inpatient epilepsy diagnosis rooms will agree to have blood samples taken during their stay. Researchers could measure hormone levels in the blood and compare them with the timing of seizures, looking for patterns.

Tamara Akiyama of suburban Beaverton, Ore., already has helped with related research, sending samples of milk for testing after the birth of her son, Steven, in September 2002. Akiyama, 43, has had several nighttime seizures since getting encephalitis at age 16.

She rarely discusses her seizures; most of her friends don’t know about them. But Akiyama hopes getting involved in research and discussing her experiences will de-stigmatize the condition and let other women with seizures know they can have healthy children.

Akiyama worked with Yerby for years planning her pregnancy. That included easing off multiple drugs and onto one new medicine that works so well she has had no seizures since 2000.

It took five years for the couple to conceive, and she admits to being “pretty petrified” about the possibility of problems, including a seizure during labor. But no major problems have surfaced, and Steven seems to be a healthy, smart toddler.

“He’s the greatest thing that ever happened to either one of us – life changing in a totally positive way,” Akiyama said.