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Last year, at least 160,000 blood samples from newborns arrived late to labs across the country.
The Milwaukee Journal-Sentinel ran another great investigative “Watchdog Report” over the weekend. This time it was on the topic of screening blood tests — also known as “heel prick” tests — that are given routinely to newborns to check for several dozen medical disorders.
“The entire premise of newborn screening,” writes Journal-Sentinel reporter Ellen Gabler, “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, at least 160,000 blood samples from newborns arrived late to labs across the country last year, according to a Journal-Sentinel analysis of screening tests from 31 states, including Minnesota. (The other states refused to provide the newspaper with their screening test data.)
The analysis found that Minnesota has a better record of getting newborn blood samples to labs quickly than many other states. But the rates vary by hospital.
As a result of delayed lab work, many babies across the nation received delayed diagnoses of otherwise treatable illnesses, such as galactosemia, an inherited disorder that prevents a baby’s body from digesting sugar in breast milk or formula.
Gabler describes in heartbreaking detail what happened to several children whose diagnoses were delayed. One is 3-year-old Aiden Cooper, who has serious developmental problems because his initial newborn screening test was “lost” and his galactosemia was not detected and treated until 3½ weeks after his birth.
As Gabler notes, “any late test could be catastrophic for a child with one of the disorders caught by screening. 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.”
Key findings
Here are some of the specific findings of the Journal-Sentinel's investigation:
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 percent 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 percent 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.
Minnesota’s numbers
The Journal-Sentinel requested 2012 newborn screening data from all 50 states and Washington, D.C. The nation’s capital and 31 states — including Minnesota — complied, although only 26 states released the data with hospital names. Minnesota was among them.
The national data included almost 3 million newborn screening tests. Each state collects its data a bit differently, so a direct comparison between states is not possible. Still, the state-by-state findings are interesting.
In Minnesota, only 1.94 percent of Minnesota’s newborn blood samples (1,300 out of 66,986) took more than four days to reach a lab.
In fact, many medical facilities in the state had all of their samples get to a lab within four days. But 24 Minnesota facilities had more than 5 percent of their samples fail to meet that time goal, and several had more than 10 percent fail.
Here's one example cited by the Journal-Sentinel:
In 2012, St. Elizabeths Medical Center in Wabasha, Minn., had 10.45% of newborn screening samples arrive at the lab 4 or more days after they were collected.
That means out of 67 blood samples sent that year, 7 arrived 4 or more days after they were collected.
Four days is the state’s target for getting newborn blood samples to a lab. That’s one day longer than the three-day recommendation made in 2005 by a newborn screening committee created by the U.S. Department of Health and Human Services, Gabler reports.
Most newborn screening samples are sent to the Minnesota Department of Health, which tests them for more than 50 possible medical disorders. In some cases, samples are sent instead to the Mayo Clinic in Rochester.
Other states
The two states with the best records in the Journal-Sentinel’s analysis were Iowa and Delaware. Only 0.18 percent (67 out of 37,737) of Iowa’s and 0.27 percent (31 out of 11,411) of Delaware’s newborn blood samples took five or more days to reach a lab. (The Journal-Sentinel used five or more days as the unacceptable time limit if a state did not signify its own shorter time target. Five days is what most laboratory directors consider unacceptable, the newspaper reported.)
At the other end of the spectrum were Arizona and Texas, with 16.65 percent (12,986 out of 77,995) and 14.55 percent (54,426 out of 374,019) of their samples failing to get to a lab within five days.
The Journal-Sentinel’s home state, Wisconsin, had 2.94 percent (1,769 out of 60,259) of its newborn blood samples reach a lab within five days.
Hospitals gave Gabler a variety of excuses for why they don’t send their newborn blood samples quickly for testing, including errors by new staffers who are unfamiliar with the procedure’s protocols, mail or delivery delays, and efforts to keep health-care costs down.
Many hospitals wait until they have a batch of blood samples to send to a lab. “This can save hospitals money on shipping charges,” writes Gabler, “but it defies adamant warnings from health officials that babies can die or suffer permanent disability from delays in treatment caused by batching. Often, delivery costs are covered by the states or insurance. The hospitals batch anyway.”
Putting babies lives at risk
As Gabler writes, the 50-year-old practice of the heel-prick screening test “is considered a major public health success, identifying disorders in time to improve or save the lives of more than 12,000 newborns in the United States each year.”
Yet many babies continue to die — or become permanently disabled — because some hospitals and health officials are not getting blood samples from the screenings to labs in a timely fashion.
“They think they are saving a few dollars in their budget,” Dr. Edward McCabe, the chief medical officer for the national March of Dimes told Gabler, “but they are putting babies’ lives at risk.”
You can read the entire investigative report on the Journal-Sentinel’s website. You can also click on a map on the site to examine state-by-state data. Minnesota’s data is further broken down by medical facility.