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States change newborn screening procedures in wake of investigation

States across the country are making significant changes to their newborn screening programs after a Milwaukee Journal Sentinel investigation found that thousands of hospitals were late in sending babies’ blood samples to state labs that test for rare yet deadly genetic disorders.

From keeping labs open on weekends to identifying problem hospitals and providing them with regular performance reports, dozens of health officials are reviewing and retooling their state-run programs.

“It was a wake-up call to everybody,” said Paul Jarris, executive director of the Association of State and Territorial Health Officials, which represents the chief public health officials from every state. At its annual meeting last week, the group discussed ways to improve the quality and performance of newborn screening programs, addressing problems identified by the newspaper’s series of stories.

In Washington, the two hospitals with the worst records in the state last year for getting the newborn screenings to labs on time were in Spokane. Valley Hospital and Deaconess Hospital already had made changes before the newspaper series was published last month and now report that they are in full compliance with state law.

A day or two after birth, nearly every baby born in the country has his or her heel pricked and blood collected on a card that is supposed to be sent within 24 hours to a lab for testing.

The entire premise of newborn screening is to detect disorders quickly so babies can be treated early, averting death and preventing or limiting brain damage, disability and a lifetime of costly medical care. But one of newborn screening’s most important metrics – speed – has been ignored for tens of thousands of babies’ tests each year, the Journal Sentinel analysis of nearly 3 million newborn screening tests found.

Dozens of states have made changes. To name a few:

Courier services that take samples from hospitals to labs have been added or extended in several states – including Texas, Arizona, Missouri and Wisconsin – to make sure blood samples are not delayed in the mail or kept at a hospital for more than 24 hours after collection.

In Arizona, the state lab will no longer be closed for three consecutive days when there is a three-day weekend.

Throughout the country, state health departments and committees that advise them on newborn screening are holding meetings to plan quality improvement initiatives.

About one in every 800 babies is born with a potentially severe or deadly condition that can be treated and managed if the child is properly tested. These babies often appear healthy at birth but can become extremely sick within days.

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