Cutting Risks Latino Babies Face

Audelia Urzua was unable to see her baby girl immediately after she was born by caesarean section years ago. The young mother could only hear her cry before the infant was whisked away.

An unknown doctor soon appeared and gave Audelia the bad news, bluntly, in English, about her baby’s birth defects. Your daughter is very ill, he said. She may never walk. She may even die.

Audelia became hysterical. The nice American nurse, who was translating the cold facts into Spanish, cried with her.

“Porque a mi?” agonized the young Mexican mother who also had to undergo an emergency hysterectomy. Porque a nosotros? Porque a mi hija?”

“Why me? Why us? Why my daughter?”

Today, Audelia and her husband, Fernando, still don’t know the answers to those questions. But they no longer torment themselves, wondering why their girl, Sarai, was born with spina bifida, a crippling spinal deformity. She has developed into such a smart, strong and charming girl that the Anaheim couple sees her as a blessing, not a hardship.

But others are still asking why.

Why indeed do Latina women have babies with birth defects at a higher rate than the rest of the U.S. population? Why do women of Mexican heritage suffer the highest rates of all, compared to Puerto Rican or Cuban mothers?

And the most important question: Can anything be done to prevent these tragedies?

This week, health professionals gathered in Orange County to explore birth defects and infant mortality in a conference sponsored by the March of Dimes. The three-day event, held at the Laguna Cliffs Marriott Resort in Dana Point, focused on the most common causes of infant deformity and death, and the strategies for preventing them.

A highlight Friday was the scheduled panel discussion during which five young people born with spina bifida, like Sarai, told how they cope with their condition. The conference wraps up today with the presentation of grants for research and for community health and education services.

Group Hears From Experts

This marks the first time a national conference of this scope has been hosted by the Southern California chapter of the March of Dimes, which includes Orange County. Among the more than 400 participants were physicians, nurses, dietitians, nutritionists, genetic counselors, and child health advocates.

They heard experts talk about topics such as placental clues for diagnosing birth defects, and the benefits of folic acid in reducing the risk.

I was surprised to learn that the risk for Latinos was so high.

The rate of infant death due to neural tube defects is twice as high for Latinos as for African Americans--15.8 per 100,000 live births compared to 7.5. According to statistics provided by the March of Dimes, the rate for non-Latino whites is 9.5 per 100,000.

Among Latinos, Mexicans have the highest rate of infant death because of these deformities--17.5 deaths per 100,000 births compared to 11.2 for Puerto Ricans and 12.5 for Central and South Americans.

Why such a difference among ethnic groups?

Could corn in the diet be a culprit?

Researchers have found that corn infected with a common mold may contribute to birth defects by interfering with the absorption of folate in the body. Folate is the natural form of folic acid, a B vitamin, found in foods such as spinach, beans and liver.

Strangely, attention was focused on the connection between corn consumption and birth defects when horses started dying in Texas, near the Mexico border. Scientists found that the animals had a fatal disease caused by the corn mold toxin.

At the same time in the same region, high rates of birth defects were detected, especially among babies of Mexican-American women. It was likely that these mothers ate more corn products than other groups, digesting the mold, which is not fatal to humans.

Researchers at Emory University later discovered how the mold toxin interferes with a receptor that transports protective folate to

the placenta, kidney, breast and other tissues that require the highest amount of the vitamin.

In the early 1990s, scientists already had established that taking folic acid before and during the first weeks of pregnancy can reduce the incidence of neural tube defects by 50% to 70%. As a result, the Institute of Medicine recommends that any woman of childbearing age take a daily dose of 400 micrograms of synthetic folic acid, the kind found in fortified foods and vitamin supplements.

Waiting until conception is too late. Folic acid is needed by cells that reproduce rapidly, as the human embryo does in the first weeks after conception, when the critical structures of the brain and spinal cord are being formed.

“By the time you know you’re pregnant, you’ve missed that big opportunity” to help prevent a neural tube defect, said Karla Damus, an epidemiologist and nurse with New York’s Albert Einstein College of Medicine who spoke at the conference on the effects of lifestyle on the risk of birth defects. “The problem is that half of all pregnancies are unintended.”

Two years ago, the federal government required food producers to add folic acid to cereals, rice, pasta and other products sold across state lines. But a neighborhood bakery that makes its own tortillas is exempt from the lifesaving measure.

Studies also show that Latinos are less likely to take a multivitamin supplement, says Damus. And it’s difficult to get the needed amount of folate from natural foods, she notes.

“You’d have to eat an awful lot of beans to get your dose of folic acid per day,” said Damus, active with a community program aimed at informing families in the Bronx about the benefits of the vitamin, also effective in cases of heart disease and colon cancer.

“This is all new stuff,” said Damus, urging the public to call 888-MODIMES for more information and free materials. “You can’t imagine how many doctors don’t know this.”

Daughter Was God’s Test

Audelia and Fernando Urzua certainly were not aware of the dangers before the birth of their second child. Afterward, they didn’t want to know.

“I think if they had told us there was something we could have done or not done, we would feel guilty for having done it or not done it,” said Fernando, who started as a busboy and now works for a factory making ice cream cakes.

To this couple from Chapala in the state of Jalisco, Sarai’s birth was a signal they had been selected by God for a special test. They had to accept it and move on.

But they did more than that. They vowed that their daughter would have the chance to do everything her older brother could do. Now, she bugs Cesar, 8, because she always wants him to play school, which isn’t his favorite fun thing.

When I visited the family’s rented Anaheim home, Sarai was scooting along the tiled hallways on a small skateboard made lovingly by her grandfather with a padded and upholstered top, to protect her knees, which she uses as feet.

Doctors said she’d be a vegetable, but she started doing somersaults and handstands before she was 1. Her parents had to take pictures of the stunts to convince skeptical therapists.

Sarai has gone to school by herself on the bus since she was 3. She’s no longer in special classes for disabled students, and her nondisabled friends compete for the chance to push her wheelchair. Her smile charms strangers and earns her free goodies from merchants wherever she goes.

Sarai likes to contribute to adult conversations, cheer for soccer teams on television, and have her mother read her books. She’s so smart, Audelia says proudly, doctors remark that “what she’s missing in her legs she has in her head.”

“To see how she’s evolved gives us joy, instead of sadness,” said Fernando. “We just want to thank everybody who helped us carry this burden.”

“It was a burden at first,” corrected Audelia, as tiny Sarai sat on the dinner table, listening intently, laughing frequently, hugging her mother cheek to cheek.

“But not any more. Now she carries us.”

Agustin Gurza’s column appears Tuesday and Saturday. Readers can reach Gurza at (714) 966-7712 or agustin.gurza@latimes.com.