Ellen Gabler, Deadly Delays. Milwaukee Journal Sentinel, 16 November 2013. “The nation’s newborn screening programs depend on speed and science to save babies from rare diseases. But thousands of hospitals fall short, deadly delays are ignored and failures are hidden from public view — while babies and their families suffer.”
Winner of the 2014 Selden Ring Award for Investigative Reporting.
Excerpts from story:
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….
Last year [2012], at least 160,000 blood samples from newborn babies arrived late at labs across the country, according to the newspaper’s analysis of screening tests from 31 states. The Journal Sentinel also compiled information about newborn screening programs in every state and the District of Columbia. Among the findings:
- Labs in half the country are closed on weekends and holidays, meaning babies born later in the week could have their results delayed two or three days, postponing diagnosis and increasing harm to affected children. In February, Garrett Saine stopped breathing three times on a Sunday while his positive test results sat inside the closed North Carolina state lab. A baby born on a Friday in Colorado died the day before his newborn screening results alerted doctors to a treatable condition.
- In nearly three-quarters of the country, hospitals are supposed to send samples using overnight delivery or courier services. Yet it still takes days for hundreds of thousands of samples to arrive at labs for testing. At one hospital in Phoenix, 70% of samples took five or more days to get to the state lab just seven miles away. Some hospitals still send blood samples through the U.S. Postal Service’s regular mail. It saves them money.
- Many hospitals ignore regulations that require them to quickly send babies’ blood samples to labs, and suffer no consequences when they’re late. Last year in New York, only 60% of samples arrived at the state lab within 48 hours of collection — the time period required by state law.
- For nearly 15 years, federal regulators and public health officials have discussed the need to standardize newborn screening systems throughout the country, but little action has been taken beyond increasing the number of conditions tested. Most state-run programs do not follow guidelines issued in 2005. As a result, programs vary so widely that a baby born with a disorder in one state can have a worse outlook than if born in the state next door. Some labs don’t even track how quickly hospitals send samples.
- Lab administrators and public health officials in dozens of states have fought to keep the track records of hospitals hidden. Expectant parents have no way of knowing if the hospital where their baby will be born delays sending blood samples for these lifesaving tests….