Latinos and neural tube defects

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The bad news came on Valentine’s Day in 2005, when a cryptic voice mail warned Lucia Foret about strange findings on her routine ultrasound.

Foret soon learned the daughter she was carrying had spina bifida or “split spine.” The baby could be paralyzed and face other serious disabilities. A genetic counselor mentioned abortion.

Eventually, the Highland mother blamed herself.

She doesn’t smoke or drink alcohol. During her pregnancy, she made sure to eat enough fruits and vegetables. She practiced yoga. But she wasn’t taking a multivitamin with folic acid before she conceived — a daily habit that might have prevented the birth defect.

“I would never have done anything to harm her,” Foret says. “I just didn’t know.”

It’s been 30 years since a British pediatrician discovered the power of folic acid — which can prevent half to 70 percent of neural tube defects, in which the spine or brain are undeveloped.

Yet most women don’t know the vitamin must be taken before pregnancy. And Latinas such as Foret, 40, whose parents are from Guatemala, are at greatest risk.

They know less than other women about the need for folic acid. And genetic research indicates many are less able to metabolize folic acid — making it even more crucial that they get the right amount.

But while pasta, bread and cereal are fortified with the B vitamin, staples of the Latin diet — such as tortillas — are not.

The result: The rate of the birth defects in Latino babies can be twice as high as whites.

“This is a huge disparity that exists and is totally unfair,” says Cindy Brownstein, president of the national Spina Bifida Association. “We want to see people be able to access what’s the right of every citizen, and that’s good health.”

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Timing is everything • Foret started taking multivitamins with folic acid when she learned she was pregnant. By then, her baby’s neural tube — which forms by the 28th day of pregnancy to become the brain and spinal cord — was already deformed.

At first, scientists rejected the idea that the lack of a nutrient could be responsible for complex birth defects in the spine and brain.

But in the 1980s, British pediatrician Richard Smithells published his breakthrough: By giving women with previously affected pregnancies folic acid before and during their next pregnancy, the number of babies born with neural tube defects plummeted.

Even today, it’s unclear how folic acid — found naturally as folate in dark leafy vegetables, legumes and citrus — prevents the defects. But the vitamin, which helps produce and maintain cells, becomes pivotal during pregnancy. Normally, a flat layer of cells folds over and “zips up” to form the neural tube in a fetus.

“Folic acid appears to be helpful to make sure that process moves along at the appropriate rate so everything closes by the time all the signals turn off, saying, ‘We’re done closing now,’ ” says Danielle LaGrave, a genetic counselor at the Utah-based ARUP laboratories, which analyzes genetic tests used to diagnose birth defects.

When there is a snag and the tube doesn’t close properly at the head, it causes anencephaly, a fatal condition in which the brain and skull don’t develop.

An opening lower on the tube causes spina bifida, in which the spinal cord and its protective sac can protrude from the opening.

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The gift of Rose • Foret was five months pregnant when she and her husband, Bob, heard the diagnosis. To blunt their pain and fear — Would their daughter be able to walk? Would her brain be normal? — they referred to their baby as a gift, their Rose.

Every fetal kick represented hope that she wouldn’t end up in a wheelchair. That would depend on where her opening was located: Many children with spina bifida are partially to completely paralyzed below the opening in their spine, making walking difficult to impossible and causing bowel and urinary incontinence.

The Forets spent time with other families whose children had spina bifida, learning that their intellectual and social skills were intact.

When Rose was born in the summer of 2005, she was whisked to surgery to close the lesion to protect as many nerve connections as possible.

Months later, when her forehead started to bulge, a shunt was placed in her brain to drain a buildup of cerebrospinal fluid, a common complication of spina bifida.

Counting all the surgeries, physical therapists and other aids, the lifetime cost of spina bifida per person is estimated nationally at $532,000.

With a lesion low on her spine, Rose has no feeling in her feet. As a toddler, surgeons cut into her tendons after various casts and even a twister cable hooked to a hip harness failed to stop her from trying to walk on the tops of her feet.

Now the 5-year-old is able to walk with and without braces. When she was recently fitted for new leg braces, she ran around an open room playing tag.

“She’s a social butterfly,” Lucia Foret says after another appointment with a pediatric radiologist to check for kidney damage.

As Rose and the grandfatherly sonographer chatted about day care and Disneyland, Rose confidently told him, “If you want, you can call me by my nickname, Rosie.”

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Success — and lost chances • When Smithells published his results in the 1980s, it was the first time a birth defect had ever been prevented.

Action to protect women and children was swift after his findings were confirmed in 1991. A year later, the U.S. Public Health Service urged all women of childbearing age to take 400 micrograms of folic acid a day. Folate is consumed and absorbed more easily in the synthetic version — it would take eating 200 red apples, for example, to consume that amount.

In 1998, the U.S. Food and Drug Administration mandated folic acid be added to American staples of white flour, bread and pasta. As a result, roughly 1,000 fewer babies each year are born with neural tube defects.

Today, the vitamins and fortification are considered as important to children’s health as buckling them up in car seats and putting them to sleep on their backs, says national expert Charlotte Hobbs, director of the Arkansas Center for Birth Defects Research and Prevention.

But just a sliver of women realize they should take folic acid supplements before getting pregnant, meaning thousands more babies are born with defects that could have been avoided.

A 2009 national survey by the March of Dimes found 40 percent of all women of childbearing age take a multivitamin with folic acid, and just 11 percent know to take folic acid before pregnancy.

Nationally, 17 percent of Spanish-speaking women — 27 percent of Utah Latinas — take a daily vitamin.

With low to no budgets for prevention campaigns, public health officials struggle to counter myths that Latinas believe: That multivitamins are expensive, cause weight gain, are just for children or are only necessary while pregnant.

Guadalupe Bahena, 22, originally from Mexico and now living in Salt Lake City, said she took vitamins during her pregnancies because her doctor told her to. But after her son and daughter were born, she stopped.

“Right now, I feel like my body’s just fine,” she said through an interpreter.

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No certain thing • Taking folic acid is not a guarantee. Lindon mother Katrina Navarro was taking a multivitamin when she became pregnant with her fifth son. Joshua, now 5, was born with spina bifida.

“I pushed him out and he had this big sac on his back,” Navarro said. “Then they said he had spina bifida. … I hadn’t even heard that term before.”

Women are at higher risk of having a child born with spina bifida if they take certain anti-seizure medications , if they are obese, or if they have diabetes.

Or if they are Latina.

A gene known as MTHFR aids in the metabolism of folic acid, says Lorenzo Botto, a pediatric geneticist and epidemiologist at the Utah Birth Defect Network who has been studying folic acid and birth defects for 15 years nationally and internationally, including with Smithells in Rome.

About 20 percent of Hispanics in Mexico and the U.S. have two copies of a variant of a gene associated with the metabolism of folic acid, doubling the women’s risk of having a child with neural tube defects, according to researchers including Botto.

Taking a multivitamin may blunt the genetic risk, he says. And with rates of neural tube defects still high, “We still haven’t achieved the full potential of folic acid.”

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Enlisting tortillas • Corn tortillas are Foret’s version of white bread. Not just for taco night, she wraps them around hot dogs. “I’m Latin. I love to eat tortillas.”

When the FDA required manufacturers in 1998 to add folic acid to wheat flour, breads, pasta and cereals, it excluded a key ingredient in the diet of Latin Americans: the corn masa flour in tortillas.

With Latinos less likely to eat fortified foods like cereal, groups like the national March of Dimes and Spina Bifida Association want the FDA to allow for expanded fortification.

While the idea went nowhere earlier in the decade, advocates believe the FDA is more receptive under the Obama administration . The Spina Bifida Association, along with corn flour and tortilla manufacturer Gruma, the Centers for Disease Control and Prevention and the March of Dimes, met with the FDA in August. The CDC says it will issue its recommendation on fortifying corn masa by September 2011.

“That’s another avenue for reaching women with folic acid,” says Alina Flores, health education specialist at the CDC’s National Center on Birth Defects and Developmental Disabilities.

A study she co-wrote showed fortification could boost Mexican-Americans’ consumption of folic acid by 20 percent. And the intervention is cheap: Studies have shown it costs about $3 million a year to fortify wheat flour , saving up to $145 million a year in direct medical costs for the defects.

Expanding fortification, says Brownstein of the Spina Bifida Association, “speaks to what’s fair and what’s right.”

Lucia Foret also supports a major public relations campaign to urge women to take vitamins months before conception. As a board member of the Intermountain Spina Bifida support group, the group sent information to doctors, urging them to educate their patients.

“I know if [my doctor] would have said something, I would have done something about it,” says Foret.

She hasn’t stopped taking a multivitamin since she was pregnant with Rose. And she tells other women to do the same.

hmay@sltrib.com

 

Q&A

What is folic acid?

The synthetic version of folate, it’s a B vitamin that helps produce and maintain new cells and is especially important during times of rapid cell division, such as pregnancy and infancy. It can help prevent serious birth defects of the spine and brain.

Where can I get it?

It’s found naturally in leafy vegetables, citrus fruits, beans and whole grains. But the body more easily absorbs the vitamin through multivitamins and fortified foods such as pasta, bread and cereal.

Who needs it?

To prevent birth defects, it must be taken during the first weeks of pregnancy — before most women know they are pregnant.

That’s why health officials encourage women of childbearing age to take 400 micrograms of folic acid every day, in addition to the folate found in their diet.

With half of pregnancies unplanned, even women who don’t plan to have children are urged to include it in their diets.

How much do women need?

For most women, 400 micrograms a day before pregnancy and 4,000 micrograms for women who have had a previous pregnancy affected by the birth defects.

Can I take too much?

Adults should not take more than 1,000 micrograms a day in the synthetic version because it could mask vitamin B12 deficiency, and some studies have linked folic acid to promoting existing cancer cell growth.

What about men and children?

They also need it for proper growth and development including preventing anemia. The Institute of Medicine recommends men take 400 micrograms of folate a day, whether through foods or vitamins. Children’s needs vary, from 65 micrograms as an infant to 300 micrograms as a teen.

Sources: National Center on Birth Defects and Developmental Disabilities, CDC; National Institutes of Health Office of Dietary Supplements.

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About this article

This article was conceived and produced as a project for The California Endowment Health Journalism Fellowships, a program of the University of Southern California’s Annenberg School for Communication & Journalism.

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© 2010 The Salt Lake Tribune