More States Screening Newborns for Diseases

But March of Dimes says 1 million still missing out on potentially lifesaving tests

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By Serena Gordon
HealthDay Reporter

TUESDAY, July 11, 2006 (HealthDay News) -- The number of babies receiving 29 essential screening tests has nearly doubled in just a year, a new survey finds.

The good news, from the 2006 March of Dimes Newborn Screening Report Card, is that almost two-thirds of babies born in the Unites States receive most of the recommended newborn screening tests. The bad news is that means about 1 million babies still aren't screened properly. That lack of screening could result in serious complications, including brain damage or death, for babies with rare but potentially treatable metabolic disorders.

These screening tests are important "because they save lives," said Dr. Jennifer Howse, president of the March of Dimes, in White Plains, N.Y. If newborns with certain metabolic conditions aren't screened, she said, "the consequences can be early death or a lifetime of severe health problems and disability."

"What March of Dimes would like to see is that by the end of 2008, every newborn in every state is screened for these 29 core conditions," she added.

Of the 29 screening tests recommended by both the March of Dimes and the American Academy of Pediatrics, 28 are for metabolic conditions and the 29th is a hearing screening test, Howse said. Identifying hearing loss in infancy is important so early interventions and assistance can be given.

Screening for these disorders is crucial because all metabolic conditions on the list can be treated if caught early, according to Howse. Some examples of the disorders include sickle cell anemia, galactosemia and PKU.

Sickle cell anemia is a disease of the red blood cells that can damage the lungs, kidneys and brain if left untreated. Galactosemia is a disorder in which the body can't digest galactose, a sugar present in milk. If a baby with this condition is fed milk or milk products, mental retardation, blindness and even death can result. PKU, a disease in which the body can't properly digest phenylalanine, a substance found in many foods, can be treated with a special diet. Untreated, it can cause brain damage and mental retardation, according to the March of Dimes.

Because of the potential for saving lives and preventing complications, the American College of Medical Genetics recommended in 2005 that all babies in the United States be screened for the 29 disorders. That recommendation was endorsed by the American Academy of Pediatrics and the March of Dimes.

Howse said the United States lacks consistent national guidelines for newborn screenings.

Currently, just five states -- Iowa, Maryland, Mississippi, New Jersey and Virginia -- and the District of Columbia screen newborns for all 29 conditions. However, last year, only Mississippi offered the full screening program.

This year, 31 states -- home to about 64 percent of all babies born in the United States -- required testing for more than 20 of the recommended screens. That's up from 23 states covering 38 percent of the babies born last year.

"We really give the states credit for moving ahead so quickly. It's quite remarkable that we've gone from 38 percent to 64 percent in just a year. Having said that, however, we still have a ways to go. But, there's a momentum going in all of the states," Howse said.

Eight states require fewer than 10 of the recommended screening tests: Arkansas, Kentucky, Nebraska, New Mexico, Oklahoma, Pennsylvania, Texas and West Virginia. But that doesn't mean that individual hospitals within those states aren't performing all of the tests, Howse pointed out. But, she added, people need to check to see what screening tests are done if they live in a state that doesn't require the full screening panel.

"You can arrange to get all of these tests privately, and the cost is between $25 and $125. They're not expensive tests to perform," she said.

Screening is done by testing a few drops of blood, usually from a newborn's heel, before hospital discharge.

Dr. Mariana Glusman, a pediatrician at Children's Memorial Pediatrics Uptown Clinic, in Chicago, said, "The chances that your child will have one of these conditions are extremely rare -- we're talking about finding a needle in a haystack." But, she added, for those few babies who do have these conditions, "early detection really can make a difference and prevent long-term complications."

More information

To learn more about newborn screening tests and what's recommended for every baby, visit the March of Dimes.

SOURCES: Jennifer Howse, M.D., president, March of Dimes, White Plains, N.Y.; Mariana Glusman, M.D., pediatrician, Children's Memorial Pediatric Uptown Clinic, Chicago; July 10, 2006, 2006 March of Dimes Newborn Screening Report Card

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