Take a close look at any part of the U.S. healthcare system, it seems, and you'll find another botched practice that sickens or kills patients and wastes billions of dollars.
What could be simpler than this: Test newborns for illnesses that can be identified and prevented, saving lives and saving vast expenditures on treatment that would otherwise be required later.
Take the blood at birth, overnight it to a lab, check the results, and adjust treatment accordingly. That's what hospitals and doctors do.
Here's what Ellen Gabler and her colleagues at the Milwaukee Journal Sentinel found out when they reported on how well the system is working in 31 states from which they could get data:
- Labs in half of the country are closed on weekends and holidays, meaning some babies die before screening results alert doctors to treatable conditions.
- It takes days for samples to reach labs. At one hospital in Phoenix, "70% of samples took five or more days to get to the state lab just seven miles away."
- Last year in New York, only 60 percent of samples arrived at the state lab within 48 hours, as required by law.
- Most state-run programs do not follow guidelines issued in 2005.
- Lab administrators and public health officials in dozens of states have fought to keep hospital track records secret.
Gabler leads with an example of what can happen as a result: Aiden Cooper, born in Arkansas, seemed healthy, but he couldn't keep his formula down. He went home, his stomach became swollen, he was limp and pale–and he wouldn't eat. It took three-and-a-half weeks for his newborn blood sample to be tested. It revealed that he had galactosemia, a condition that could have been treated by giving him a different formula. But the damage was done. The boy, now almost three years old, doesn't say more than two or three words at once, walks unsteadily, and has a hard time feeding himself. If the tests had been done quickly, this wouldn't have happened.
It's shameful.
Gabler and her colleagues did what sounds like a backbreaking amount of reporting to get the newborn-testing records, including making repeated requests to many states and, when states resisted, making appeals to state health officials.
This is also one of the most comprehensive, readable, and visually attractive investigative series I have ever seen on the web. Here's the beautifully designed home page of the series, which makes it easy for readers to digest a large amount of material:
This package, which includes short profiles of 20 babies affected by the tests and videos, is as good a presentation of an investigative series as anything I've seen on the web. I can't help but think about how this beautiful package contrasts with the ugliness of the behavior recounted in the stories.
The series also includes an interactive graphic that will let many readers across the nation look up statistics on their own local hospital.
Somebody–NPR, ProPublica, 60 Minutes, The New York Times, This American Life–should partner with the Journal Sentinel on stories such as this. This is a national story–and a national disgrace.
Here's a list of the people who worked on the story, all of whom deserve our congratulations, and our thanks:
Reporters: Ellen Gabler, Mark Johnson, John Fauber | Interactive applications: Allan James Vestal | Photo journalist: Kristyna Wentz-Graff | Graphics: Lou Saldivar | Online presentation: Emily Yount | Print design: Nick Lujero | Copy editors: Karen Samelson, Jen Steele | Photo editing: Angela Peterson | Project editor: Greg Borowski.
-Paul Raeburn
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