NEW YORK — A normal pregnancy doesn’t guarantee a healthy child. Dana Devantier had a normal delivery, too, but from the day her son Johnathan was born, something wasn’t right.

"They couldn’t keep him satisfied at the hospital so they constantly returned him to me to nurse him. They just thought he was a hungry kid," Devantier recalls.

"He had a hoarse, horrible cry. Unbeknownst to us, that’s a sign of MCUD (maple syrup urine disorder). Once we got him home, he had a hard time breast-feeding and had a lot of hiccups."

The hiccups were a symptom of an oncoming seizure and by the time Johnathan was 5 days old, he was comatose.

The Devantiers live in Cedar Hill, Mo., about 40 miles southeast of St. Louis.

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Doctors at two hospitals were stumped. Finally, at a third, a doctor conducted a urinalysis and figured out the problem, mostly because he smelled the syruplike scent of the potentially fatal protein breakdown. At that point Johnathan was in renal failure.

A screening test for MCUD exists and it could be done as part of the heel-prick test newborns get before leaving the hospital. The test would’ve made a diagnosis right away, but it isn’t done for kids like Johnathan who don’t fall into a high-risk category.

"This could be been done on the first day of life, before kids have any protein. Three days makes a huge difference. If he wasn’t diagnosed on the seventh day, he would’ve died on the eighth," Devantier says.

She doesn’t blame the doctors because Johnathan had a rare disorder that’s not on most doctors’ radar screens. A screening test, though, can check for so many obscure-yet-serious illnesses at once, she says.

Devantier believes the tests aren’t done because it’s an additional cost for something that benefits so few families. But, she adds, the cost of Johnathan’s six weeks in the hospital certainly cost more than the tests.

Johnathan is now 7 and leads a "decent" life, says his mother. He looks "absolutely healthy" but he has a learning problem and his diet is mostly vegetables that are low in protein, such as cucumbers, celery and potatoes. He eats a lot of french fries and other high-sugar, high-calorie options that go against conventional nutritional thinking.

You’d think he’d be over the moon with a diet like that but there are so many limits that Johnathan can’t ever really enjoy a meal. His birthday cake has to be made with egg substitute, and he drinks a foul-tasting formula every day; it’s his only real nutrition.

"He drinks it with a lot of effort on my part, and he does understand that he has to have it to live," Devantier says.

Screening tests wouldn’t be able to stop disorders such as MCUD, or the organic acid metabolism disorder known as IVA (isovaleri acidermia), or the fatty acid disorder known as MCAD (medium- chain acyl-coa dehydrogenase deficiency). But, says Dr. F. Sessions Cole, the director of newborn medicine at St. Louis Children’s Hospital, early detection would help infants get the right care right away.

"I’ve had two experiences with these disorders," Cole says. "One time I had to share the bad news in the face of a metabolic problem after the baby had a very severe consequence, and one time it was when the baby was still normal. There was shock from both sets of parents, but the parents who hear the news before an adverse consequence are able to deal with it. They know there is something they could do about it."

Cole didn’t personally treat Johnathan.

Earlier this year, Missouri expanded its genetic testing for newborns to 29 disorders. The March of Dimes’ state-by-state report card on genetic screenings found that only 23 states screen for more than 20 disorders; Cole notes that many experts do recommend testing for 29.

He’d like to see the Centers for Disease Control and Prevention adopt a standard that all states would have to follow. The federal Department of Health and Human Services conducted meetings this summer to consider uniform screening standards.

Improvements in testing comes with improved technology, explains Cole. A tandem mass spectroscopy can do many tests in a short period of time with results that are sensitive and specific, he says.

Most children in most states are tested for sickle cell disease even though there is no cure, Cole notes.

"You might say, ‘Why bother?’ " he says. "But parents can be educated how to deal with it. Second, children with this disease are more susceptible to bacterial infections so you can start them on antibiotics right away."