Two years ago, Illinois became one of the first states to expand its newborn screening program to detect rare diseases that require immediate treatment.
Thanks to that screening, 10-month-old Dylan Clark of Wheaton is a healthy baby today. Because his disease was detected early, Dylan was treated before he suffered irreversible brain damage.
"It saved his life," said his mother, Jennifer Clark.
But now the state is taking a step backward, doctors say, by raiding the screening fund to help balance the state budget.
The state is diverting a $3.4 million screening fund surplus to the general budget. State officials say there still will be enough money to screen for 34 diseases, and even add new screening tests.
But doctors have joined the March of Dimes in a letter-writing campaign to protest the fund transfer.
"While we at the March of Dimes understand the budget crisis in Illinois, we do not understand the need to put this burden on the backs of newborn babies," the organization wrote to Gov. Blagojevich.
The screening fund does not come from taxes -- the money comes from a $47 fee charged to parents of newborns. Therefore, March of Dimes argues, the money should be used solely for the benefit of newborns.
Illinois has been screening infants since 1962, beginning with phenylketonuria, or PKU. Later, sickle cell anemia and four other devastating diseases were added.
In 2002, Illinois became one of the first states to use new technology to test for a batch of rare diseases that can cause mental retardation, blindness, disability and death. The test requires a small blood sample from a heel prick. The state now detects about 320 new cases per year, or nearly one per day.
In the recent budget deal, the governor and the Legislature agreed to raise $260 million by raiding surpluses from newborn screening and 60 other state funds.
The surpluses were sitting idle while the state grappled with a $2.3 billion budget deficit, said Becky Carroll, a spokeswoman for the governor's budget office. Sweeping the surpluses is helping the state maintain funding for health and education without increasing taxes, she added.
But Dr. Barbara Burton, a Children's Memorial Hospital pediatrician, worries that with the surplus gone, there won't be enough money to make badly needed improvements in newborn screening, such as upgrading the computer tracking system and sending blood samples to the state via overnight delivery.
However, the state says there will be enough money to do all this, and more. "We have one of the most comprehensive screening programs in the United States, and we plan to improve it," said Tom Schafer, a spokesman for the Illinois Public Health Department.
Before newborn screening was expanded, little-known disorders such as homocystinuria and maple syrup urine disease often were misdiagnosed. Children would suffer irreversible damage by the time their diseases were identified.
Fortunately, that didn't happen to little Dylan. His disease, argininosuccinic aciduria, was detected within days of his birth. A special feeding formula and amino acid supplements are keeping him healthy.
As he gets older, Dylan will have to eat a low-protein diet, with little or no meat, fish or eggs. Otherwise, "he's a perfectly happy, healthy little boy," his mother said.
She's thankful Illinois does more than most states to screen newborns. "But it is disappointing Illinois is pulling away some of the money."
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