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Utah's newborn screening law works to catch infants with hearing loss, study says

SALT LAKE CITY — Abigail Wright can still remember the confusion of the day, seven years ago, that nurses announced her son had failed his newborn hearing test.

"Everybody kind of put it off," Wright said. "I asked so many people, 'What does this mean?' I couldn't seem to get any answers on what or why."

Through a stroke of luck, a specialist knew to test for a common but relatively unknown virus called cytomegalovirus, or CMV. It turned out Alex had been infected by by the virus in the womb.

Because of stories like Alex's, Utah became the first state in the U.S. to require all newborn who fail their hearing test be tested for CMV.

Now a study led by University of Utah researchers shows that the law led to the improved surveillance and identification of babies with hearing loss — including those who did not have the congenital infection.

The study, which was published in the journal Pediatrics on Tuesday, examined the first two years of the screening program.

Of the 234 infants who were tested for CMV after failing their newborn hearing test, 14 were CMV-positive. Of those 14 infants, six had hearing loss, according to the study.

Lead author and University of Utah family and consumer studies professor Marissa Diener said that without the screening program, it is "really unlikely” that those babies would have been identified.

"It's a success for sure," she said.

Diener and colleagues also compared statistics for babies born before and after the Utah law was enacted.

They found that infants born after the law was passed were almost three times as likely to receive a timely hearing test than those who were born before, whether or not they were at risk of CMV.

Because the virus rarely causes symptoms in adults, it is not well-known.

Yet CMV is the most common congenital infection in the U.S., affecting 1 in 150 children in the U.S. each year, or about one newborn each day in Utah.

About 1 in 5 babies who get CMV infection in the womb will be sick or have long-term health problems, including hearing loss, vision impairment and mental disability.

The symptoms of congenital CMV parallel those of a much more well-known virus — Zika. But CMV doesn't have "the buzz" that Zika does, said Stephanie McVicar, program manager for the early hearing detection intervention program at the Utah Department of Health.

"It's really quite devastating every time I hear about a family that's been affected by it," she said. "It just makes us want to try even harder to prevent that."

Doctors and public health experts have disagreed about the extent to which pregnant women should be counseled about CMV.

There is no vaccine or standard of care treatment for the infection, although scientist are testing antivirals that have shown promise.

And while preliminary studies have shown that handwashing and avoiding contact with urine or saliva can prevent transmitting CMV to babies, some doctors believe more research is needed.

In 2015, the American Congress of Obstetricians and Gynecologists decided not to encourage doctors to counsel women on how to avoid CMV, citing a lack of high-quality data.

The decision angered some doctors and public health specialists.

Diener said it's beneficial for parents to be aware of whether their baby was infected with CMV so they can watch for signs and symptoms. Some babies who are infected by CMV can pass their newborn hearing test but develop hearing loss later.

Studies have shown that infants who are hard of hearing have better outcomes when diagnosed and treated before 6 months of age.

"We didn't do a cost-effectiveness analysis, but if a child gets diagnosed later with hearing loss, their outcome is not going to be as good and we're going to spend a lot more money on them for special education and for early intervention," Diener said.

Amid the debate, several states have since followed in Utah's footsteps. In recent years, Connecticut, Texas, Tennessee, Hawaii and Illinois have enacted legislation meant to increase awareness about CMV or improve screening efforts.

Some advocates, like Logan resident Sara Doutré, believe that screening for CMV should be expanded to all newborns, not just those with hearing difficulties.

Doutré's daughter Daisy was a year old when she started losing her hearing. Tests later confirmed that the cause was CMV.

"I had been a special ed teacher," Doutré said. "My mom had been a special ed teacher. We worked with kids with disabilities our whole lives and had never heard of CMV."

Doutré, along with her mother, former Rep. Ronda Menlove, R-Garland, helped pass the CMV screening law in Utah that was the basis of the University of Utah study.

Several Utah moms, including Doutré and Wright, later founded the National CMV Foundation, which raises awareness about CMV across the U.S.

"A lot has happened in those seven years," Wright said. "I'm so happy for any of those families that come behind us."