State health officials are storing the blood of infants born in Utah
(KUTV) — It happens in the blur of everything that happens right after a baby is born: The nurse comes in and "prick." A small needle pierces the infant’s heel and blood is dotted onto some official-looking circles on a piece of paper.
It's called a newborn screening panel. Once the blood leaves your kid's foot, it is rushed to the health department, where a team of scientists check for 39 different diseases or conditions. They are looking for the types of issues that won’t become obvious until a kid grows up.
By law, the State has to hold the blood for 90 days. But a Get Gephardt investigation found that most of our babies' blood and DNA is being saved for about a decade.
Newborn Screening Director Andy Rohrwasser granted Get Gephardt unique access into the bowels of the State lab to see for ourselves where approximately half a million baby blood samples are kept on ice.
Rohrwasser says the main reason they keep the samples is so the blood can be tested again if, say, there is a medical breakthrough in the years after a child is born. The State also uses the blood samples to develop new tests.
Rohrwasser says having the samples stored helps children in the future.
“It allows us to prepare for any emerging new test, and this will help the next generation of babies. It's that simple," Rohrwasser said.
It’s not just the State that wants to access the blood. Public records show that, sometimes, access is granted. In the past four years, the state was asked to open the freezer doors five separate times to share the samples.
Two of those requests were granted — once for a health department study and once for a University of Utah study.
The health department would not say who the other three requesters were, and they don’t have request records going back beyond four years.
Rohrwasser says parents should not be worried about their children’s privacy. The cards in this freezer are identified by numbers, not names, and there is a rigorous review process to make sure the person accessing the blood has a bona fide reason to do so.
Any time the blood being shared can be tied back to a specific child, there are legal safeguards in place to make sure the child's privacy is protected, including getting parents to sign off.
Your child's blood could be shared without you knowing about it, but only if it was shared unidentifiably.
In his lab, Rohrwasser says they are less focused on the major study requests, and laser focused on trying to save kids' lives.
“The more that we can ensure that every baby gets a result, the better we are as a community," he said.
Jerrah Horrocks is grateful for the newborn screening process. Her daughter, Juniper, was born with a condition called Medium-chain acyl-CoA dehydrogenase or ‘MCAD.’ The condition makes it impossible for Juniper to digest certain foods for energy.
Juniper’s birth came with a warning: Don't put her down for bed for a full night, or she may never wake up.
“[The newborn screening lab] definitely saved her life when she was a newborn," she said.
Juniper is thriving today. As for that blood sample taken years ago, Horrocks said she hasn't given it much thought but assumed it was gone.
Learning the state’s explanation for why it’s not, Horrocks said she’s not concerned.
"I think that's great that they're looking for new things and that they're adding more to the screenings,” she said.
Heidi Wallis' oldest child, Samantha, was born with a rare disease: Her body doesn't produce enough creatine, which can cause brain damage.
It's easily treated if treated from birth, but it was not among the diseases for which the State lab tested when Samantha was born. By the time Samantha showed signs, she was five years old, and it was too late.
Samantha will require assisted living for her entire life.
“There's no getting back those formative years," Wallis said.
Learning that the gene runs in her and her husband's blood, Wallis knew to test her other children when they were born. Sure enough, her fourth child, Louie, tested positive for the condition.
A long as Louie takes a simple, over-the-counter supplement, he won’t suffer the same fate as his older sister.
"He's six now, and he's been treated since birth, and he's unaffected," Wallis said.
Wallis is now pushing for states all over the country to test for the disease in newborn screenings, and health departments storing infant blood in a freezer makes that possible.
"Without all of those samples, they can't do research for rare diseases," she said.
In fact, the remnants of Samantha's and Louie's blood, saved for years in that freezer, are now being shared with state labs all around the country, so those states can develop their own tests.
Wallis worked closely with Rohrwasser’s team, and the condition that effects Samantha and Louie is now tested for in the State of Utah.
Wallis has also asked Congress and the U.S. Health Department to add the condition to their recommended lists of conditions for which all states should test. Thus far, those efforts have been unsuccessful.
More information about creatine deficiencies can be found online here.
More information about MCAD can be found here.