Brianna Bruening knows better than most how important the mandatory newborn blood screening process can be.
Her daughter’s life probably was saved by it — and efforts are underway in Missouri to expedite the process.
Samples of her newborn’s blood were sent through a snowstorm from a Kansas City hospital to a state testing laboratory in Jefferson City back in 2009. In days, Bruening found out her daughter had a rare hereditary disease that makes it difficult to break down fat into energy. It can cause a body to fail if it goes long without food.
“One night of letting her sleep through the night or letting her ‘cry it out’ could have had a dreadful outcome,” Bruening said.
By law, every child born in the United States is required to quickly undergo blood-screening tests. Hospitals are supposed to send the blood samples for testing within 24 hours.
According toan investigation by the Milwaukee Journal Sentinel
, however, Missouri ranks near the bottom among states in how quickly the samples reach labs.
It’s a situation that puts lives at risk. And after reading about the problem in The Star, Rep. Sheila Solon, a Blue Springs Republican, thinks she may have found a simple solution.
In conjunction with House Budget Chairman Rick Stream, she has included in the state’s budget about $160,000 to ensure the state lab in Jefferson City, the only site for the testing, remains open on Saturdays, and a courier service that transports the samples expands to run seven days a week. Solon said those two changes would alleviate many of the issues surrounding the delayed testing.
“This will not only help save lives, it will also save the state millions of dollars in potential medical costs,” Solon said, pointing out that 48 percent of all births in Missouri are paid for by Medicaid.
Of the 31 states that provided information to the Milwaukee Journal Sentinel, Missouri’s hospitals ranked fifth worst on average in shipping samples in a timely manner. Roughly 11 percent of the nearly 66,000 newborn blood samples taken in 2012 took five days or more to reach the state testing laboratory.
Five days is considered by many experts to be an exceedingly long time for samples to reach labs. In that time, an infant could be well over a week old before results are available. For certain disorders, the wait could be life-altering.
“Early identification leads to early treatment and leads to improved outcomes,” said Dr. Sarah Gordon, a pediatrician from Jefferson City.
Tuesday, a House committee heard legislation sponsored by Solon that goes a step further than simply allocated funds to address the issue. Her bill would create a legal requirement that blood samples must be shipped to the lab within 24 hours of birth.
Additionally, the bill would require a hospital have at least one employee who is responsible for the samples being sent out every day.
“People go on vacations, are sick, leave the hospital or go to work in another department,” Solon said. “Sometimes due to lack of education and understanding the importance of these samples, it simply falls through the cracks. Having a person responsible will make sure that doesn’t happen.”
Newborn screening is believed to have identified disorders in time to improve or save the lives of more than 12,000 newborns each year. About one in every 800 babies is born with a potentially severe or deadly condition that can be treated or managed if the child is properly tested.
The hospital in Missouri with theworst statistics
was Truman Medical Center Lakewood, where 32.52 percent of samples did not leave the hospital for at least five days.
St. Luke’s Hospitals were among the highest performing, with 2.61 percent taking at least five days.