Law touted as 'proven success' at making newborn hearing tests standard practice

New London — Two-day-old Adalind Miller slept through the first of what is sure to be many tests she will take in her lifetime, but nonetheless reached the target score with ease.

“Ooh, she passed,” Mary Ellen Masciale, neurodiagnostic technician at Lawrence + Memorial Hospital, said Friday after giving the newborn an automated acoustic brainstem response test — ABR for short — that detects hearing loss in infants.

"The sound is like a little purring click, at 35 decibels, which is a whisper. It puts them to sleep. A lot of parents ask if they can take the test home,” she said.

As Masciale administered the test, the Miller family — father Brian and mother Ashley, along with their daughters Gabrielle, Aubrey and Kailyn — watched, learning how the procedure works and tracking the results on a computer screen wheeled beside the cradle.

The first hearing test Masciale gave Adalind, on a handheld device, wasn’t working properly, so she opted for the more involved but still noninvasive ABR procedure, which tracks brain wave activity stimulated by sounds transmitted through earphones.

Electrodes placed on the baby’s forehead, neck and back “measure how long it takes sound to get from the acoustic center to the hearing center of the brain,” Masciale explained.

The test was one of the final procedures Adalind received before going home with her family to Groton later that day, but one that provides parents with a critical piece of information that can make a big difference for the rest of the child’s life.

Since 2000, the newborn hearing test has been required for all newborns by a federal law — even though some of the nation’s hospitals, including L+M, already were performing it.

The cost of the test is covered by private or government health insurance programs, but wasn’t always included as a standard benefit until the law passed.

Since the law was enacted, the practice has become nearly universal. The percentage of newborns getting the test nationally has risen from 40 percent in 2000 to 97 percent, according to Sen. Richard Blumenthal, D-Conn.

The senator is co-sponsoring legislation with fellow U.S. Sen. Chris Murphy, D-Conn., to ensure that the high testing rates are sustained, as well as the life-changing follow-up services children with hearing loss now routinely receive.

This week, Blumenthal announced his support for reauthorization of the Early Hearing Detection and Intervention Act, which expired in 2015.

The House of Representatives passed the reauthorization bill in September, but the Senate has not acted on it.

“This bill encourages early intervention, and that’s the key for these kids,” Blumenthal said Monday. “It is transformative. Of all the bad things that can happen to kids, here’s one thing we can prevent.”

The law, he added, is “a proven success,” providing the data collection, tracking, educational materials and other programs that have spurred widespread compliance at hospitals.

In Connecticut, 99 percent of newborns receive the screening.

Of the 37,242 Connecticut babies screened in 2015, 570 did not pass the initial test, and 96 were diagnosed with hearing loss after follow-up testing, said Maura Downes, spokeswoman for the state Department of Public Health.

Even though that’s a relatively low rate of 2.5 babies per 1,000, hearing loss is still one of the most common types of birth defects, according to Ellen Gill, auditory and verbal therapist at the Capitol Region Education Council’s Soundbridge program, which provides services statewide.

“Very early identification and getting started early with intervention makes such a difference,” Gill said. “The kids don’t miss any learning time, and most of them can now be successfully mainstreamed.”

Under the bill, $10.8 million in federal funds would be provided annually from 2016 to 2020 across the country to ensure compliance with the testing requirement, monitoring of follow-up testing and support for the diagnostic centers that do the follow-up testing and intervention, including referrals to early education programs, according to Patricia Lake.

Lake is an audiologist at L+M, which has one of eight diagnostic centers around the state where parents with babies who fail the initial test go for services.

The center is supported by some of the $420,000 that is Connecticut’s share of the larger federal grant.

“We can fit them with hearing aids as young as 3 weeks old,” Lake said. “The sooner you do it, the better. We don’t want to lose early intervention.”

Early detection the key

Last year, five babies born at L+M were referred to Lake's office, as well as another 17 born at other hospitals in the region including The Westerly Hospital and The William W. Backus Hospital in Norwich.

Oftentimes, she said, newborns fail the initial test because of fluid buildup in their ears, a condition corrected surgically with tubes that enable drainage.

Other babies with some hearing get hearing aids, and those with the most severe deafness are referred for cochlear implants, devices that electronically stimulate the brain’s hearing center.

Advances in these devices over the last 20 years have had a profound impact on enabling deaf children to speak and learn, parents and experts say.

Kim Laden of Griswold knows first-hand what a difference early detection can make. She is the mother of four sons, all of whom have different levels of hearing loss.

Two of them wear cochlear implants, and one has been fitted with hearing aids.

Her youngest, born just a week ago, also will probably need some type of device, she said, based on the results of his initial test.

But that doesn’t worry her, after witnessing how well her older children are doing with speech, learning and becoming independent.

Her 25-year-old brother, however, was not so lucky.

Born before the newborn hearing tests were standard, his deafness wasn’t detected until he was 4 years old and already behind.

“My three older children were identified right away, and we got help right away, and you can see the difference,” she said. “My brother is delayed because of not having that. He’s not able to be independent.”

Another mother, Sharon Kane of Ledyard, is equally grateful that her 15-year-old daughter Rachel had the newborn hearing test when she was born at Backus just six months after the federal law passed.

After failing the first test in the hospital, Kane brought her daughter back for follow-up testing two weeks later, which confirmed hearing loss.

“Early detection was the key,” she said. “We got her fitted with hearing aids within six months, and she learned how to speak and now she’s a straight-A student. She dances four times a week, does acting, plays soccer and tennis. She’s been able to do everything she’s wanted to do."

"This test is a very simple thing," she said. "As hard as it was to hear that at first, it scares me to think what would have happened had it not been detected.”

j.benson@theday.com

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