Nationwide, pervasive-but-avoidable delays in testing newborn blood samples for genetic diseases are proving deadly for newborns, according to new investigative reporting from The Milwaukee Journal-Sentinel:
Nearly every baby born in the United States has blood collected within a day or two of birth to be screened for dozens of genetic disorders. 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.
Yet one of newborn screening's most important metrics — speed — is ignored for tens of thousands of babies' tests each year, a Milwaukee Journal Sentinel analysis of nearly 3 million screening tests shows.
Journal-Sentinel reporters analyzed information from nearly 3 million newborn screening tests in 31 states, finding that at least 160,000 blood samples from newborn babies arrived late at labs across the country. For babies born healthy, such delays aren’t harmful
But they can be life-threatening for infants born with conditions that can be detected by newborn screening, including cystic fibrosis, sickle cell anemia, galactosemia and phenylketonuria:
Hours can mark the difference between a child who suffers permanent brain damage and a child who lives a healthy life with a modified diet.
In one case cited, an infant died of complications of galactosemia five days before his newborn blood sample even arrived at a laboratory for testing. The Journal-Sentinel has created a searchable database that provides newborn screening data for many hospitals nationwide. You can search for hospitals in your state or compare states’ performance. In some cases, outside labs aren’t open on nights or weekends, delaying testing. In others, hospitals “batch” multiple samples to save money and staff time, resulting in delays in getting samples to labs.
While many California hospitals, including Lucile Packard Children’s Hospital, reported no or very few delays in shipping newborn blood samples to labs for testing in 2012, others reported hospital-to-lab delays of five or more days for nearly 60 percent of their samples. Statewide, 2.36 percent of newborn blood samples took five or more days to reach laboratories. Among the states reporting data, the percentage of late-arriving samples ranged from less than 1 percent to nearly 15 percent.
Some hospitals already are making changes in their policies as a result of the Journal-Sentinel’s reporting.
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