The newborn screening program, developed 50 years ago, is “a public health miracle that we should not take for granted,” said Dr. Dennis Costakos, neonatology chairman at Mayo Health System-Franciscan Healthcare in La Crosse.

Many of the nation’s hospitals imperil newborn infants’ lives by not getting their blood tests to laboratories fast enough to flag serious illnesses, according to a Milwaukee Journal Sentinel investigation.

The special section, titled “Deadly Delays,” chronicled the results of the newspaper’s analysis of nearly 3 million screening tests for genetic disorders from 31 states.

At least 160,000 tests arrived late at laboratories, according to the analysis.

In Wisconsin, nearly 1,800 samples took five or more days to reach the Wisconsin State Laboratory of Hygiene, where they are screened for 45 different illnesses, according to the report.

The newspaper said it undertook the eight-month national investigation after an infant nearly died from an easily treatable condition when the New London hospital where he was born delayed sending his screening to the Wisconsin State Laboratory of Hygiene.

The tests involve pricking the baby’s heel within a day or two of birth and collecting small spots of blood on a filter paper card. Hospitals are supposed to send the cards to state labs within 24 hours.

The newborn screening program, developed 50 years ago, is “a public health miracle that we should not take for granted,” said Dr. Dennis Costakos, neonatology chairman at Mayo Health System-Franciscan Healthcare in La Crosse.

“The point of newborn screening is to find the kids before they get sick,” Costakos said during an interview with the Tribune. “For many, the lack of treatment could mean brain damage or death.”

The screening system not only saves infants’ lives but also alerts family members to genetic disorders they may not have known about, Costakos said

The tests also can lower health care costs by treating illnesses early, avoiding a lifetime of expensive treatment or reducing the tally, he said.

Time is of the essence to diagnose babies with rare and hard-to-detect illnesses that could cause brain damage, physical disabilities and death. Treatment often is simple, such as changing feeding or providing vitamins to counter the illness.

Among Journal Sentinel staffer Ellen Gabler’s findings:

  • Labs in half of the country are shuttered on weekends and holidays, often delaying analysis of samples of babies born late in the week. For example, the newspaper reported, a baby born in Colorado on a Friday died before his screening results alerted doctors to a treatable condition. The results arrived the day after he died. Another Colorado baby, with the same disease as the first boy but born on a Tuesday, survived because his tests were screened promptly and he was treated.
  • Hospitals in almost three-fourths of the country are supposed to use overnight delivery or courier services to send samples to labs. But some use the U.S. Postal Service’s regular mail to save money. About 70 percent of samples at a Phoenix hospital took five or more days to arrive at the state lab seven miles away.
  • Many hospitals ignore regulations demanding speed but suffer no consequences when they are late.
  • Federal regulators and public health officials have discussed the need to standardize testing systems across the nation for almost 15 years, with little action. State programs vary so much that a baby born with a disorder in one state can suffer damage from a disease that might have been caught in a neighboring state.
  • Lab administrators and public health officials in many states, including Wisconsin, have sought to keep hospitals’ track records hidden.
  • Hospitals blame delays on a variety of factors, such as new employees’ not knowing the protocol, delays in mail or delivery services, cost-cutting and holiday and vacation snags. Some “batch” samples, meaning they wait until they have several to send to labs to save money, even when states or insurance covers delivery.

Gundersen Health System in La Crosse and Mayo-Franciscan fared well in the Journal Sentinel analysis.

Gundersen’s samples reached a lab five or more days after being taken in just 29 of 1,414 cases, a 2.05 percent rate, the analysis found. Nearly 83 percent arrived in three days or fewer.

Dr. Jennifer Kleven, Gundersen’s medical director of general pediatrics, said, “It’s always good to get information on how we’re doing and how we’re doing compared with other hospitals. We’ll do whatever we can to improve.”

Kleven attributed Gundersen’s low rate of delays to “a great group of nurses, lab personnel, pharmacists and providers.”

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The screenings, which Gundersen delivers to the state lab via courier, are important to detect problems, she said.

“If anything, they over-catch,” prompting further review of a possible condition that later is proved normal, she said.

“They absolutely have caught diseases in tiny babies that we could treat,” Kleven said.

She cited metabolic disorders as an example of early detection that helps doctors adjust an infant’s diet.

“If we don’t get it, it could have tragic consequences,” she said.

Mayo-Franciscan was beyond five days with only 21 of 926 samples, for a rate of 2.27 percent, according to the Journal Sentinel analysis. Nearly 90 percent were under three days or less.

Costakos said the screenings find most babies normal, but the chance of finding even one health problem makes them worthwhile.

“If something is picked up early, it can improve their life or save a life,” said Costakos, whose investigation of biotinidase in 1990 led to its being one of the conditions the screenings seek.

The condition results when the body doesn’t recycle a vitamin called biotin needed to break down fats, proteins and carbohydrates, he said.

Babies with the condition, which Costakos said occurs in about 1 in 50,000 births, appear normal at first but may start having seizures four or five days later.

“We knew if diagnosed within the first two weeks of life, we could save a life or and prevent neurological disability by placing the baby on high oral doses of a vitamin. Monthly cost of the vitamin biotin is $1,” he said.

Deafness could result if the disease is undetected, Costakos said.

Regarded health care costs, Costakos said, “One must only think of how people live longer, and healthier, or how we have seen polio become so infrequent because of modern vaccines.

“Money spent on the health care of neonates divided by the lifespan of the patient was a bargain compared to medical care for adult patients,” he said.

“In standard economic approaches, treatments are considered cost-effective if they provide a quality-adjusted life year for less than $50 000. In neonatology, each quality-adjusted life year costs less than $10,000 — even for infants at the lowest birth weights,” he said.

“Imagine the human and economic benefit of successful prevention, especially for babies,” Costakos said.

Information from stories by Journal Sentinel reporter Ellen Gabler was used in this story.

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