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Lawmaker hopes to save babies by mandating simple newborn screening test

SALT LAKE CITY — Julianna Bean's life was likely saved before she was ever born.

An ultrasound picked up a potentially fatal heart defect in the now-1-year-old at about 20 weeks of gestation. While her parents were less than thrilled to hear their baby wasn't perfect, they were relieved to know the child's condition could be treated.

"It was scary," said Masha Bean, Julianna's mother, recalling the day of their first ultrasound. "We just wanted to see pictures of the baby. We already knew it was a girl; we knew that part. But we didn't expect them to say that our baby would need surgery when she's born."

Although it is uncommon that an ultrasound will pick up potential critical congenital heart defects, another simple and already available test can help to rule out a number of them before a newborn heads home for the first time.

Rep. Paul Ray, R-Clearfield, has proposed a bill at the Utah Legislature that would include pulse oximetry testing in the bevy of newborn tests performed at hospitals and birthing centers prior to a baby being discharged.

The simple, painless and low-cost test can sense the amount of oxygen in a baby's blood and detect a lower-than-average pulse rate, which could signal problems.

"It's not being done across the board. Some do it and some don't," Ray told members of the Senate Health and Human Services Committee on Monday, where HB276 was being heard. He said the Utah Department of Health estimates that 10 of 50 hospitals in the state use the test to screen newborns on a regular basis.

In the United States, about 7,200 babies — or 18 of every 10,000 born every year — have critical congenital heart defects and usually require surgery or catheter intervention in the first year of life, according to the U.S. Centers for Disease Control and Prevention. The agency estimates that 300-400 infants with unrecognized defects are discharged every year in the U.S., putting them at risk for serious complications with the first few days or weeks of life.

Congenital heart defects, which obstruct normal blood flow through the body, are the most common cause for defect-related deaths in babies, the CDC reports.

"This is certainly a lifesaver, and it is not routinely being done," Ray said.

Pulse oximetry screening is best done between 24 and 48 hours of age and shouldn't replace a complete history and physical examination. The test doesn't always detect a problem with a child's heart, but it can, however, signal a need for additional testing, such as an echocardiogram.

The American Heart Association reports that not all congenital heart defects are detected at infancy and some are not detected until adulthood, requiring monitoring by a cardiologist to avoid further deterioration of the heart through heart disease, heart rhythm issues and pulmonary hypertension.

It is unknown how the abnormality is caused, although past research has pointed to genetics and the environment, as well as unknown causes.

HB276 wouldn't immediately require medical facilities in Utah to begin incorporating the pulse oximeter test, but would instruct the state health department to conduct a pilot program to determine the prevalence of its use in newborns. Upon results of the study, the bill dictates that the test should go into practice everywhere by Oct. 1, 2014.

The bill, which has already successfully passed through the state's House of Representatives, doesn't imply a cost to the state, as most facilities are already equipped with pulse oximeter instruments that are used on other patients at the time of admittance and/or during various surgeries.

"I'm just trying to save babies, and this is the best way to do it," Ray said.

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."


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