Spreading word on `magic bullet'

SUN JOURNAL

Underuse: Health officials find that not enough women of child-bearing age are taking folic acid, a low-cost supplement that can prevent spina bifida in children.

September 05, 2001|By Mike Bowler | Mike Bowler,SUN STAFF

DROGHEDA, Ireland - Patricia Byrne was born in 1960 with two open lesions at the base of her spine, exposing raw nerve bundles.

Doctors told Byrne's panicked mother she would be better off not knowing what was wrong and waited three days to unite mother and child. They waited another five years to make the diagnosis official, such was the shame surrounding what became known as the "Irish disease" because of its high rates here.

Byrne had spina bifida, the most common and one of the most debilitating of "neural tube" birth defects caused by the failure of the spine to fuse during the first month of pregnancy. Fortunately, medical researchers now know what Byrne's parents had no way of knowing: Three-quarters of neural tube defects can be prevented if women regularly take an over-the-counter B-vitamin supplement known as folic acid, a year's supply of which costs as little as $5.

"Things have changed in Ireland," says Byrne, today the mother of three healthy teen-agers. "There's a different attitude toward spina bifida, and more women know that there's a way to prevent it."

But things aren't changing rapidly enough in Ireland or around the world, in the estimation of many medical and public health experts. The rate of spina bifida births has declined in Ireland in recent years, possibly because more women are taking folic acid and eating foods that contain the acid naturally. But the vast majority still aren't taking enough to make a difference, according to recent estimates.

That goes for the United States, too, says Godfrey Oakley, an epidemiologist at Emory University in Atlanta and one of the leaders of what has been called the "folic acid revolution."

"We know we can prevent 75 percent of the cases with a little pill that costs almost nothing," Oakley says. "Yet six to nine babies are born every day in the U.S. with neural tube defects. It's like having the Salk vaccine and not giving it out. If we had the same rate of polio as we do of spina bifida, it would be a national emergency."

Stephen Kinsman, an authority on birth defects at the Kennedy Krieger Institute in Baltimore, agrees. "Somehow," he says, "spina bifida hasn't taken on the same kind of collective mentality that we have about cancer. We're not attacking it as strongly, and our public care of spina bifida is underfunded."

Oakley says the crucial period for spina bifida is the first 28 days of pregnancy, when the fetus' spine is formed. If it doesn't close properly, he says, it's as if the child has been in an accident and suffered a broken back. But since half of pregnancies are unplanned, he says, all women of child-bearing age should take folic acid.

Spina bifida is one of the most devastating of birth defects. Thanks to improved medical and surgical care, most children born with the defect survive, although they may experience degrees of paralysis, loss of sensation in the lower limbs, club feet, difficulties with bowel and bladder management and hydrocephalus - excess fluid in the cavities of the brain.

Byrne, for example, developed scoliosis, curvature of the spine, which has required three operations on her back. With a rod in her back, she moves about with some difficulty in her office job at Drogheda's Millmount Museum.

Rita Rice hadn't heard of spina bifida or of folic acid when her son, Michael, was born here with spina bifida in 1984. He's had "countless" operations since then, Rice says, "and he has club feet. We're still trying to get him to be able to walk, but we take the cards we're dealt."

Rice, 44, says she took folic acid supplements before and during two subsequent pregnancies, both of which resulted in healthy babies, but "the stress and worry in the hospital were terrible." (Studies show that if one child has spina bifida, the risk of recurrence in subsequent pregnancies is 1 percent to 5 percent.)

Rice and Byrne are participants in a spina bifida research and prevention project in Drogheda whose sponsors hope to discover why Ireland has one of the world's highest rates of neural tube defects. Eventually, they want to identify women at risk, make them aware of the risk and persuade them to take folic acid daily.

Ireland is ideal for the study, says Julianne Byrne (no relation to Patricia), director of the Boyne Research Institute, established here in 1992. As late as 1980, 47 of every 10,000 births in nearby Dublin resulted in spina bifida, although that rate has dropped steeply in the past 20 years. "It's an astonishing number compared to the current 10 in 10,000 rate in Dublin and even less in the United States ... " Byrne says.

Isolating the causes of neural tube defects, Byrne says, "is very much the work of a detective." She and her institute colleagues are interviewing the extended families of spina bifida victims, asking about their experiences with birth defects and about their diets before and during pregnancy.

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