Nearly two years ago, we brought you the story of Kye Johnson, an adorable toddler with a potentially fatal genetic condition that meant constant hospitalizations, lasting physical damage, untold anxiety and enormous medical bills.
If Kye had been given a $5 blood test at birth, his severe combined immunodeficiency disease (SCID) could have been found and treated at a fraction of the cost in suffering and dollars.
So it was good news when the Florida Legislature agreed to add testing for the rare condition to the screening all Florida newborns receive for some 35 conditions. But here's a key question we hadn't thought to ask: How do you know whether newborns' tests are promptly analyzed so doctors can take action?
The Milwaukee Journal-Sentinel did ask this question of officials in every state, and the results should interest everyone who cares about babies in specific, and health care in general. All told, the newspaper examined the results of 3 million tests administered in 2012 and found that thousands of hospitals and scores of state agencies might be putting babies at risk. You can find the series, "Deadly Delays,'' at www.jsonline.com.
Most babies pass their tests. But without screening, it's impossible to find the unfortunate few before it's too late.
Just ask the parents of Aiden Cooper, an Arkansas boy whose blood sample sat for weeks before it was tested. In the meantime, Aiden's parents told the Journal-Sentinel, their baby was in the intensive care unit, his belly swollen, suffering with a terrible infection.
Aiden had a metabolic disorder, galactosemia, an inability to digest the sugar in animal milk that essentially meant he was being poisoned with every feeding. A switch to soy formula would have helped address the problem, but by the time the test results came back, he already had suffered brain damage. Three years later, he's well behind his peers in speaking, walking, and even feeding himself.
No one knows how many children have suffered like Aiden, because test results are confidential. But delays are uncomfortably common.
In Florida, 3.4 percent (8,689 out of 252,834) of samples took at least six days to get to the testing lab in Jacksonville, the newspaper found. That's not the worst nor the best, though precise comparisons are difficult due to different reporting methods.
The worst record in Florida came from a hospital here in Tampa Bay, St. Joseph's North in Lutz, where 41 percent of the 400 samples taken in 2012 took six or more days to get to the lab. Yet sister institution St. Joseph's Women's Hospital posted one of the best records in the state, 1.4 percent. (By the way, St. Joseph's Women's delivers more babies than any other hospital in the Tampa Bay area and is one of the busiest obstetric programs in Florida.)
Lisa Patterson, a spokeswoman for St. Joseph's Hospitals, explained that when St. Joseph's North first opened, test samples were sent to Tampa so they'd go in a batch to the Jacksonville lab with tests from the larger hospital. This is a cost-saving practice the Journal-Sentinel found around the country. However, Patterson said, BayCare officials realized this was causing excessive delays and now both hospitals send test samples on their own.
She said the problem was caught even before the Journal-Sentinel story was first published in November, but she vividly remembered her first question when she heard of the problem. Had any children been harmed? Fortunately, the answer was no.
The best record for speedy test deliveries in our area goes to All Children's Hospital, with just 0.4 percent. Winnie Palmer Hospital for Women and Babies in Orlando, the state's busiest obstetric hospital, scored an impressive 0.03 percent.
The newspaper also noted that some state labs keep longer hours than others. I checked with the Florida Department of Health, and was told that the state public health lab went to five-day-a-week testing from May to October 2013 "to determine the effectiveness of Saturday screening.'' Apparently they missed having the sixth workday, and now samples are processed 8 a.m. to 5 p.m., Monday through Saturday.
Should you conclude from this one data point whether a hospital is good, bad or mediocre? If only judging hospital quality were so simple.
But every parent should expect that when blood is drawn from their newborn's heel, that test is speedily shipped, properly examined, and the results swiftly reported.
Another important point: Florida is among only 26 states that would give the Journal-Sentinel test data for every hospital. It took seven months for South Carolina to come clean — and last month it finally revealed that an astounding 34 percent of samples took five or more days to get to the state lab.
Florida is justly famed for its public records laws, and we all should be deeply suspicious every time politicians try to water them down, usually claiming they are seeking to protect the public. But as the "Deadly Delays'' investigation shows, shining a light can be what truly protects those who need it most.
Charlotte can be reached at [email protected] or (727) 893-8425.
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