Lawmaker hopes to save babies by mandating simple newborn screening test

The committee unanimously supported the bill Monday, passing it to the full body of the Senate for consideration, despite reservations by Sen. Daniel Thatcher, R-West Valley City, about adding practice standards to statute.

Utah wouldn't be the first state to make the testing mandatory. It would join about a dozen others, and more are considering programs to expand the screenings.

The Utah Legislature added hearing tests for newborns to the state code in 1998, and metabolic screenings, including for phenylketonuria, which was mandated in 1965. There is no federal law for newborn screening, rather states must enact their own requirements.

Bean, of Holladay, said a pulse oximeter was one of many instruments taped to her daughter's tiny body in the first six weeks of her life while she underwent heart surgery to close a hole between the two main valves and stayed under the care of doctors.

Julianna, whose technical condition is called double-outlet right ventricle, had been born a month early, and though she continues to be small for her age, all other signs point to a completely healthy childhood.

"She's a good, happy girl," Bean said, adding that despite the rough start Julianna had at life, she hasn't let it keep her down.

Bean and her husband, Eric, are expecting a second child in June, and while the 20-week ultrasound didn't show any abnormalities, they're following up with further tests prior to the birth because "you never know when it can happen again," she said.

"I would tell anyone having a baby to find out as soon as you can so you're not sent home with a problem like that. Because when you have to show up in an emergency room with your baby turning purple and blue, they just won't know where to start and it might be too late," Bean said. "It could be a lot worse."

E-mail: wleonard@desnews.com

Twitter: wendyleonards