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Many Newborns Not Getting Critical Tests

March of Dimes says only 21 states mandate nine tests that can spot trouble

WEDNESDAY, June 30, 2004 (HealthDayNews) -- Two-thirds of babies born in the United States are going without blood tests for congenital illnesses that could kill them or leave them neurologically impaired if left undetected, according to new statistics released Wednesday by the March of Dimes.

That's because only 21 states, mostly smaller ones, mandate the nine neonatal screenings that can spot such troubles, the organization found.

This sad state of affairs continues despite the passage in 2000 of the Children's Health Act, which earmarked federal money to help states pay for what are considered vital tests.

"We want this situation corrected," said March of Dimes President Dr. Jennifer Howse. "For the past four years, we've been asking each state legislature to pass laws that mandate at least these nine basic tests."

Congenital illnesses, while rare, are often lethal if caught too late. The good news for parents is that many of these conditions can be picked up by a single heel-prick blood test conducted soon after birth. The bad news is that hospitals in most states still perform pitifully few of these tests.

"In the case of the nine tests that the March of Dimes is recommending, there's highly successful treatment available," she said.

The tests screen for the following congenital conditions:

  • Sickle Cell Anemia: A sometimes fatal blood disease, it responds well to early antibiotic therapy. Rates of sickle cell are especially high among blacks (one in every 400 newborns).
  • Hearing Impairment: Three to four of every 1,000 babies are born with hearing problems. Unrecognized auditory deficits can slow a child's learning and speech development.
  • Phenylketonuria: Commonly known as PKU, it strikes one in every 14,000 infants. Caused by an inability to process an important amino acid, PKU can cause severe mental retardation. Feeding PKU babies with a special formula can prevent this neurological damage.
  • Congenital Hypothyroidism: Characterized by a life-threatening loss of salt by the body. Salt and hormone replacement can beat the disease -- if it's caught early.
  • Biotinidase deficiency: Babies afflicted by the condition lack biotin, a B vitamin. They are especially prone to infections and neurological problems and are at high risk of coma and death. If detected early, supplemental biotin effectively cures the disorder.
  • Maple Syrup Urine Disease: Although very rare (1 in every 230,000 newborns), babies with this metabolic condition appear normal at birth but then rapidly develop irreversible mental retardation. A special diet is required to keep these infants healthy.
  • Galactosemia: Caused by an inability to digest a milk sugar, galactosemia quickly leads to organ failure and death if left undetected. If spotted early, elimination of dairy products from the diet controls the condition.
  • Homocystinuria: Another rare amino acid disorder, it can cause mental retardation, skeletal problems and stroke. Dietary changes can help treat homocystinuria once it's detected.
  • Medium-chain Acyl-COA Dehydrogenase (MCAD) deficiency: Newborns appear healthy, but this condition robs them of an ability to covert fat to energy. Unless detected and treated early, MCAD deficiency leads to seizures, cardiac arrest and death.

According to the March of Dimes, the 21 states that provide screenings for all nine conditions are: Alaska, Connecticut, Hawaii, Idaho, Illinois, Indiana, Iowa, Maine, Maryland, Massachusetts, Mississippi, Nevada, New York, North Dakota, Oregon, Rhode Island, Tennessee, Vermont, Virginia, Washington and Wisconsin.

"On the surface it might look pretty good that nearly half the states have all nine of the tests," Howse said. But "the reality is that this means that only 32 percent of U.S. newborns are getting these tests."

That's because a lot of the states on the list are smaller states, and they represent only 1.3 million babies out of a total U.S. annnual birth rate of 4 million babies.

Dr. Edward McCabe, physician-in-chief at UCLA Mattel Children's Hospital in Los Angeles, believes the stakes are simply too high to neglect neonatal screening for any of the conditions on the March of Dimes list.

Without early detection, "many children will die," he said. "They will either be severely mentally retarded, in cases such as PKU, or for some of these other disorders they will die."

McCabe advised that parents-to-be ask their doctors and health-care providers for a list of tests their newborn can expect to receive. "There's a lack of knowledge -- they may be assuming that more is being done than is truly being done," he said.

Howse agreed. "It's very important for parents to include newborn testing as one of the routine questions asked during the prenatal care visit. They have to find out what tests are given, mandated by their state, and also find out and talk with their provider, to find out if supplemental testing is recommended."

Insurance companies will often pay for neonatal screening. But even if parents have to pay out-of-pocket, the cost of all nine screens advocated by the March of Dimes shouldn't total more than $50, Howse said.

In the meantime, concerned citizens should lobby their legislators to do more if routine testing isn't up to par in their state. "They should contact their state representatives -- go to our Web site and see what their state offers," Howse said.

In 2000, the Children's Health Act specifically budgeted funds to help states expand their neonatal screening programs, she added.

Unfortunately, she said, "there's never been any money appropriated for that by Congress. It's a $25 million appropriation. Let's fix that."

More information

To find out which neonatal tests are offered in your state, check out the March of Dimes.

SOURCES: Jennifer Howse, M.D., president, March of Dimes; Edward McCabe, M.D., Ph.D., physician-in-chief, Mattel Children's Hospital, University of California, Los Angeles; June 30, 2004, report, March of Dimes
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