After seven months of delay, South Carolina became the 30th state to release information about how specific hospitals perform at newborn screening. And the news wasn’t good, underscoring the importance of transparency in an effective newborn screening program.
The state ranks among the worst in the nation as to how quickly hospitals send babies’ blood samples to state labs for testing of rare but deadly genetic disorders.
Last year, 34% of newborn screening samples took five or more days to get to the state lab for testing — a percentage that’s more than double other poor-performing states including Arizona and Texas. More than a dozen of the state’s hospitals had at least half of babies’ blood samples delayed.
Federally backed guidelines recommend blood samples take no more than three days to arrive at labs for testing, as children with these genetic disorders can die or become extremely ill just a few days after birth. Last year, only a quarter of newborn screening samples in South Carolina arrived at the lab within three days of collection.
The Journal Sentinel found that Iowa and Delaware were the only states that met the three-day turnaround time for 99% of blood samples.
Since June, South Carolina and states in almost half the country have refused to release information that reveals the performance of individual hospitals in response to a Milwaukee Journal Sentinel investigation that found infants throughout the country have died and suffered permanent disabilities because of delays in testing.
Nearly every child born in the United States has his or her heel pricked shortly after birth to test for treatable genetic disorders. Blood is collected on a card that is supposed to be sent from the hospital within 24 hours to a lab for testing.
The District of Columbia and 20 states still refuse to provide information that would allow expectant parents and the public to see which hospitals don’t properly handle the tests, which must be done quickly to save babies’ lives and are required by state laws.
“In the absence of data, parents don’t really know what is happening in their state,” said Edward McCabe, chief medical officer for the national March of Dimes, which is advocating that parents be able to see how hospitals in their state perform at newborn screening.
Speed is key
In its investigation, the Journal Sentinel used a conservative calculation of five days as a standard for lateness when analyzing data — because that is a common time period tracked and provided by many states. However, even five days can be too late for babies with treatable conditions that prevent them from processing sugar or fats in milk and formula.
In an analysis of nearly 3 million newborn screening samples, the Journal Sentinel found that one of newborn screening’s most important metrics — speed — has been ignored for tens of thousands of babies’ tests each year. Since that investigation, four more states have released newborn screening data, revealing thousands of additional late blood samples.
About one in every 800 babies is born with a potentially severe or deadly condition that can be treated and managed if the child is properly tested. These babies often appear healthy at birth but can become extremely sick within days.
As in dozens of other states, after the release of their data, South Carolina health and hospitals officials promised to make significant changes to the state’s newborn screening program in response to the Journal Sentinel investigation.
The South Carolina Hospital Association is working with hospitals and the state health department to find out why hospitals are late sending samples and how they can fix the problem.
The goal is to use “rapid process improvement” to essentially try to solve the problem in the next 90 days, said Rick Foster, senior vice president for quality and patient safety at the association.
Delays occur for a variety of reasons: New staff members do not know the protocol to send samples within 24 hours of collection; samples are “batched,” and held in groups instead of being sent right away; samples are lost or delayed in a hospital’s own laboratory or mail room; samples are sent through U.S. mail.
Foster said the hospital association is trying to determine “What do we need to do across the entire state to fix this?”
Each hospital has been provided its performance data, and the association will hold a series of webinars to discuss changes a hospital could make, such as sending samples via courier instead of the mail, and making sure staffers understand how crucial it is to send samples within 24 hours.
The state health department will begin providing monthly reports to hospitals and also will implement a new data management system to track and report the timeliness of newborn screening. The state lab will no longer be closed for more than 48 hours at a time, addressing delays that can occur during three-day weekends. In about half the country, labs are closed on weekends and holidays.
South Carolina’s poorest performing hospital has been sending its newborn screening samples through the U.S. Postal Service’s “regular” mail.
Last year, 71% of newborn screening samples from AnMed Health in Anderson took five or more days to reach the state lab, which is about a two-hour drive away in Columbia.
While AnMed officials claim they have never had a “missed diagnosis” due to such delays, it’s unclear how they would know since a child can die suddenly and unexpectedly due to a late test. And if no one in the hospital or state is tracking timeliness — as is the case throughout the country — such a mistake could be overlooked.
The hospital said it is reviewing its entire newborn screening process and plans to make changes.
“We have recognized that it is an issue that needs a better solution,” hospital spokesman Ross Norton said in an email.
As in many other states, hospitals in South Carolina say they were not aware newborn screening samples were delayed in reaching the state lab for testing.
That was the case at the state’s largest birthing hospital — Greenville Memorial Hospital, where more than 5,300 babies were born last year. About 48% of newborn screening samples took five or more days to get to the state lab, which means nearly 2,600 newborns had delayed screening samples.
“We want our state to be the best and our hospitals to be the best,” said Jennifer Hudson, medical director of newborn services for the health system, which had two other poor-performing hospitals. “If we have shortcomings, we want to fix it.”
Iowa leads way
States and hospitals throughout the country showed vast disparities in how quickly babies’ blood samples made it to labs.
In Texas, for example, more than 50,000 blood samples from babies — or 15% — arrived late at labs for testing, while in Iowa, only 67 samples, 0.18%, took five or more days to reach the lab. Iowa’s state lab is open seven days a week, and all birthing hospitals use a state-financed courier service to get newborn screening samples from the hospital to the lab, most often on the same day. In Texas, many hospitals were sending blood samples to a central location within a hospital chain, which caused delays because the samples then had to be forwarded to the state lab.
In addition to changes within states and hospitals, national advocacy organizations, trade groups for state labs and U.S. senators from both parties have promised reforms within the past month. The Association of Public Health Laboratories is leading an effort to collect information on how each state tracks newborn screening samples, which can then be used to improve state systems.
Link to interactive map
Click here for an interactive look at states and how they monitor newborn screening turnarounds