Fifty years ago, a researcher developed a test to screen newborn babies for genetic disorders. With a few drops of blood, doctors could identify a disorder before a child suffered brain damage or died.
That test launched what has become one of the most celebrated programs in modern medicine. Newborn screening is credited with saving or improving the lives of more than 12,000 babies each year in the U.S., as dozens of deadly or debilitating diseases are caught early and treated.
he success of the program hinges as much on logistics as medicine: Get the blood samples from hospitals to state labs quickly. Use the results to treat affected children, preventing a lifetime of disability and even death. It shouldn’t be hard to deliver potentially life-saving blood samples in a timely manner when books, gifts and documents are routinely delivered overnight from locations across the country.
Yet the Milwaukee Journal Sentinel found that thousands of hospitals — and dozens of state agencies that oversee the programs — are failing America’s children because of an ineffective and unaccountable system wracked by deadly delays.
Each year, hundreds of thousands of samples from newborn babies arrive late at labs across the country. In some cases, hospitals hold samples and send them in batches, saving a few dollars in postage. In others, they use the U.S. mail instead of prepaid courier services. State guidelines and laws that call for a quick turnaround are ignored and not enforced. Labs in half the country are closed on the weekend.
The consequences of these failures are devastating.
Two babies were born with the same condition in Colorado — one on a Tuesday, the other on a Friday. Today, one is a healthy toddler and the other is dead. A baby in North Carolina struggled for life — he stopped breathing three times — while the answer to his easily treatable illness waited in a closed state lab. A 3-year-old boy in Arkansas has developmental delays, struggling to walk and talk. His test took weeks to arrive at the state lab, so doctors didn’t know breast milk and formula were poisoning him.
All of this has been happening in secret — and still is in many states.
The facts were uncovered by a Journal Sentinel investigation that within weeks brought results that promise to fundamentally reform the newborn screening system — from a rewritten federal law, to improved tracking and reporting by health officials in many states.
The “Deadly Delays” project — online at www.jsonline.com/deadlydelays — offers a model for how to quantify a problem by mining data with computer analysis while using traditional investigative skills to unearth the stories of babies and families whose lives will never be the same.
It began when reporter Mark Johnson learned about Colton Hidde, born in October 2012 in New London, Wis. After Colton came home, he went limp and lifeless. His parents rushed him back to the hospital, where tests showed the ammonia level in his blood was so high machines could not measure it. He was flown to a second hospital, then a third, where doctors wrestled with whether they should even try to save him.
A day after Colton was born, he had his heel pricked for his newborn screening, but then his blood sample waited at the hospital. And waited. It waited for four days, until it was “batched” with others and sent to the state lab. Had it been sent within the recommended 24 hours, Colton could have been treated with sugar water and a special diet and then gone home with his parents a day later than usual in otherwise perfect health.
Instead, doctors had to use extraordinary, untested methods to rescue him. Now a year old, his development is delayed and it’s unclear if he’ll ever catch up.
Colton’s case sent reporters digging. They did the kind of data collection and research that in the past has largely been limited to universities and federal health agencies. Reporter Ellen Gabler sought data from all 50 states and the District of Columbia to learn how often such delays happen. Many states fought the release of the information. In five months, she wrestled data from 31 states and analyzed nearly 3 million screening samples to quantify the problem. This data, accounting for two-thirds of U.S. births, had never been compiled before.
In Texas, 54,000 samples from babies in 2012 — or 14.5% — took more than five days to get to the lab. In Arizona, one hospital had 70% of its samples arrive late, even though it was a mere 7 miles from the state lab.
News applications developer Allan James Vestal worked with Gabler to build an interactive database out of dozens of disparate data sets. The easy-to-use database lets parents and the public see — for the first time — how hospitals compare.
Reporter John Fauber interviewed families, doctors and health officials about labs being closed on weekends, states not testing for some disorders and other problems. Kristyna Wentz-Graff worked to tell the families’ stories with video and striking photography.
Once the “Deadly Delays” investigation was published in November, there was a sea change among many lab officials and others who initially stymied every effort to tell the story. In Wisconsin, officials had fought release of the data for five months. Now, the lab will send monthly reports to the state’s hospitals.
The American Hospital Association sent out a quality alert to its 5,000 member hospitals, urging them to read the series and clean up problems. States are moving to add weekend hours, improve courier services and increase tracking and reporting.
Since the investigation was published, four additional states have released hospital-by-hospital data. Many news organizations across the country have used the data to report their own stories.
In Congress, lawmakers amended a bill reauthorizing the Newborn Screening Saves Lives Act to track the timeliness of samples delivered to labs. In Arizona, one of the poorest performing states in the Journal Sentinel analysis, the health department is completely overhauling its newborn screening program.