August 02, 2004 12:00 PM

Ben Haygood seemed healthy. A happy, active 2-year-old in Belden, Miss., he loved learning to swim, watching Barney on TV and steering his battery-powered toy truck in the family backyard. “I treated him like a normal kid,” says his mother, Robin, 37. “Because that’s what I thought he was.”

Then one hot afternoon in August 2000, Ben began vomiting at daycare. Believing he had a virus, Robin, a junior high school science teacher with two healthy older daughters, gave her son crackers and Jell-O and put him to bed that night next to her and husband Vince, 37, a construction worker. Checking on Ben at 1:30 that morning, she noticed that the toddler was, “I don’t know how else to say it—very floppy,” she says, “and his breathing was shallow. Something wasn’t right.” After a desperate 911 call, Ben was helicoptered to a medical center in nearby Tupelo. By then he had stopped breathing, and despite doctors’ best efforts, “they never got him back,” says Robin. “He died within 12 hours of showing symptoms.”

The tragedy would have devastated any family. A month later it became almost unbearable when the Haygoods learned that their little boy’s death—from a rare but treatable hereditary disease, MCADD, that kept his body from metabolizing fats—could have been prevented with a simple $25 blood test at birth. “I thought, ‘Oh my God,’ ” says Robin. “There was information about this, and I didn’t know.”

Since the 1960s, all states have instituted tests for congenital disorders in newborns, done by squeezing a few drops of blood from an infant’s pricked heel. But beyond screening for PKU, a disorder in which the lack of an enzyme can cause mental retardation, the requisite number of diseases tested varies wildly. Although all but two states test automatically at birth, Arkansas, for example, requires screening for four diseases, while California may soon pass legislation mandating 61. The result, according to a recent March of Dimes report, is that fully 70 percent of all babies born in the U.S. aren’t getting tested for even a basic set of nine congenital disorders that include hypothyroidism and sickle cell anemia (see box). “There are no national standards,” says March of Dimes president Dr. Jennifer L. Howse, who’s leading a campaign for $25 million in federal funding to improve state screening. “That’s 2.7 million babies born in states that don’t offer the minimum nine tests we recommend.”

Ultimately, activists would like to expand testing to include an even wider range of disorders. Machines known as “tandem mass spectrometers” can now detect roughly 50 distinct genetic anomalies from a single infant heel stick. Experts say this expanded testing can cost between $40 and $80 per child. But while the $250,000 machines are widely available, some states have not budgeted the money for testing. “This is a national tragedy,” says Dr. Harry Hannon, chief of the Centers for Disease Control’s newborn screening branch, which estimates that testing shortfalls result in the sometimes preventable illness or death of several thousand children every year. “Every baby in this nation should be screened with these expanded tests.”

But some health officials point out that only one tenth of one percent of the four million babies born in the U.S. each year will have even one of these rare disorders. “Cash-strapped states think the tests and follow-up care—for specialty physicians and genetic counselors—are going to burden them,” says Duke University researcher Dr. David Millington. Proponents counter that the cost of treating a single child with one of these illnesses can reach hundreds of thousands of dollars a year.

Beyond financial cost is the emotional toll paid by parents such as Gonzalo and Lisa Jaquez, of San Carlos, Calif., who gave birth to Ysabel, a seemingly healthy 7-lb. daughter, in September 1999. Three days later Ysabel’s heart rate dropped to 20, she became ice cold, and her lungs filled with fluid. After the baby was hospitalized, she was found to be suffering from LCHAD, an often fatal metabolic disorder that blocks the body’s ability to break down fats into energy. “We asked the neonatologist how other children with these disorders get diagnosed,” recalls Lisa, 40. “She said the same way ours did.”

Had the Jaquezes learned of Ysabel’s condition within 48 hours of her birth, they could have given her a low-fat, high-carb diet that might have prevented the mild brain damage she suffered. The experience has led her parents to push for expansion of California’s newborn screening program. “Ysabel is a joy to us, ” says Gonzalo, 38. “But,” adds his wife, “we never want another parent to go through what we did.”

That sentiment is shared by the Hay-goods, who since Ben’s death have successfully lobbied Mississippi legislators to pass two laws, one of which carries his name and has broadened the state’s screening program to cover 40 diseases. “People experience death in different ways,” says Robin’s mother, Sharia Brown, 58. “For Robin and me, this was how we channeled our grief.”

More comfort has come in the form of the baby boy born to the Haygoods two years ago, who has tested negative for the disease that took his brother’s life. Today Ben’s miniature pickup still bears his personal license plate, but under it is another that carries the name of its new driver—Bo. “Everybody wants to leave this earth hoping to make a difference,” says Robin. “And Ben did.”

Susan Schindehette. Darla Atlas in Belden, Jane Sims Podesta in Washington, D.C., Lyndon Stambler in Los Angeles and Tom Duffy in Boston

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