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Nadine Wimmer ReportingMost parents know the importance of screening newborns for disease, but many probably don't realize Utah is among the worst in the country for doing it.
A study underway now could change what happens here, when a baby's heel is pricked in the hospital. But until it's standard procedure, there's something every parent needs to know to stay safe.
By the time Marcus Burnett's birth announcement went out, his mom suspected something was wrong.
Cindy Burnett: “I can remember putting ice on his feet to get him to wake up, to get him to eat."
They eventually went to the hospital for tests, and what doctors found prompted a frightening phone call. "That he was very sick, he could die, we need you to return to the emergency room immediately."
Marcus has a rare genetic disorder where his body doesn't retain salt. Left alone, it could be fatal. But with daily medication, her son has grown into a healthy, rambunctious little boy. Still, the family never needed to go through such trauma.
Cindy Burnett: "It was very upsetting to learn all he had gone through could have been prevented and the test was less than three dollars."
At the University of Utah they're running a study to expand the screenings newborns get. If all hospitals did it, many of these little bundles would get a healthier start in life.
It's easy to make a case for this study -- expanding tests as proposed could save up to 25 babies each year in Utah. It's as much as 1,000 times less expensive to test and catch early. And other states already do it.
Dr. George Delavan, State Health Dept.: “These are newborn babies, they have their whole lives ahead of them. So certainly if you can detect and prevent early, then they have their whole life, that can be very productive."
So why doesn't Utah already do this? Cost is one factor. Alarming parents with false positives is another argument.
Dr. George Delavan: “Sometimes that can be very upsetting to the family because for a time they're really afraid their baby may have something very serious."
The State Health Department has formed a partnership with the University Hospital and ARUP Laboratories. They want to see if it's feasible to screen every baby this way.
Jason and Jessica Nelson eagerly opted their new son Jonas into the study,
Jason Nelson: “Whatever I can learn beforehand, that’s power right there. He deserves it.”
But even before his birth, they were exploring options to pay for private testing on their own.
Jason Nelson: "We did it for our baby. He relies on us 150% and so we have to give that back to him."
And that's something every parent should know. Until something changes in Utah, you can pay private laboratories to do expanded testing. It doesn't cost much and it could give peace of mind.
For more information, talk to your doctor, call ARUP labs at 801-583-2787, or follow the link to their web site.
