Kayla Myhre, 7, waits with her mother, Sandra Myhre of Fayetteville, and 4-month-old sister, Taylor, at the spina bifida clinic at UNC Hospitals. Baby Taylor has spina bifida. Sandra says she treats her like a healthy baby and looks toward the future with hope and prayers.

Even after having five children, John and Laura Reites had never heard of spina bifida, a crippling birth defect more common than muscular dystrophy and cystic fibrosis combined. Nor had they heard that folic acid could prevent up to 70 percent of spina bifida cases.

Their education in such matters came in the obstetrician's office in 1995, when their sixth child, Christian, became one of the 200 North Carolina children who would be diagnosed that year with a neural tube defect.

"It frustrates me that spina bifida is the No. 1 crippler of newborns, and you hear so little about it and how to prevent it," John Reites said.

His frustration is shared by those who have fought for a state-supported campaign to promote folic acid use and reduce the state's incidence of neural tube defects -- anencephaly, encephalocele and spina bifida. The first two defects generally are fatal; spina bifida, which occurs when the spinal cord fails to close, is not. The hole causes some degree of paralysis, brain complications and bladder failure, depending upon where the lesion occurs. The higher the lesion, the more nerves are affected and the more severe the problems.

North Carolina has the highest rate of these defects in the nation.

And although John Reites isn't one to ponder what-ifs -- he wouldn't trade his son for anything -- the stark truth is that, for three years before Christian was conceived, federal health agencies

had been recommending that women take folic acid to prevent neural tube defects. Somehow, that important message hadn't spread across North Carolina, to Cumberland County, where the Reiteses live.

"These kids are paralyzed, like kids with polio," said T.W. Sadler, director of the Birth Defects Center at UNC Hospitals in Chapel Hill and co-chairman of the N.C. Folic Acid Council. "If we had cases of polio in this state like we have cases of kids with neural tube defects, we'd be all over it. We'd be going crazy."

Instead, advocates have had to penny-pinch to put together any type of educational campaign.

This year for the first time, the General Assembly allocated $150,000 to begin a trial program to raise awareness about folic acid in the Western part of the state, where neural tube defects are especially prevalent.

Legislators approved $200,000 for a birth defects surveillance system to help health officials pinpoint the communities where neural tube defects most often strike. Effective monitoring would also help officials know what educational efforts are working, and what more needs to be done.

Just this month, Gov. Jim Hunt announced another $350,000 infusion for folic acid education from the $67 million budgeted to Smart Start. That money will be used for a broader campaign, paying for pamphlets, brochures and posters for doctors' offices and clinics, and reminders for doctors to urge their patients to take folic acid. Advocates are encouraged by the money: "It will help save the health and lives of babies," said Kay James, executive director of the state's eastern chapter of the March of Dimes, which has fought for folic acid promotion for years.

What price prevention?

Still, the money is just a fraction of what's needed. The Centers for Disease Control and Prevention says North Carolina should spend at least $1 million a year on education and surveillance to adequately address prevention.

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