Michelle Tessier, Deseret News
SALT LAKE CITY — When Genevieve "Evie" Shawcroft came into the world just over a year ago, she likely didn't hear much of what was going on.
The sandy-haired, blue-eyed baby girl was born with mild-to-moderate hearing loss, giving her what doctors said was little chance of normal development without the help of hearing aids.
But the estimated $3,000 to $5,000 cost for the unexpected equipment and additional doctor visits was almost more to bear than the diagnosis itself, said Evie's mom, Ashley Shawcroft.
The Tooele family had already endured mounting medical bills and was making payments on a high insurance deductible resulting from an accidental injury earlier that same year. And, as with many insurance plans, hearing aids aren't a covered benefit.
"All of a sudden you have a brand new baby and then this diagnosis, and I was worried about that, but the financial costs, too, it was a lot to worry about," Shawcroft, a registered nurse, said.
She began scrambling for available resources and possible charity programs to help their cause, and came across a Deseret News article about a relatively new Children's Hearing Aid Pilot Program, which was approved by Utah lawmakers in 2013 and is enrolling children up to age 3 for free hearing aids.
Evie had failed the newborn hearing screening and two follow-up tests after that. It remains unknown what caused her hearing loss, but she fit the bill for the state program and was approved with a set of hearing aids at about 8 months old.
Up to that point, she had been fortunate enough to use a pair on loan from her audiologist.
"You need to hear sounds to be able to acquire speech and language and speech and language are the basis for communication for many people," said Dr. Stephanie McVicar, a certified audiologist and director of early hearing detection and intervention for the Utah Department of Health, which oversees the program. "Without speech and language, it isolates the children and really limits them socially and in their learning abilities."
She said the sooner the auditory system gets stimulation — by hearing sounds — the better and more ready the system is for speech and language.
"If you miss this window, you are always playing catch-up and the child may never have clear speech," McVicar said. "Children need to hear words thousands of times before they can process those sounds, before they can say them and put them into words and then recognize them in written form."
The Children's Hearing Aid Pilot Program is nearly halfway through its two-year trial period and has placed 29 hearing aids on 19 Utah children, including little Evie.
The help came at the right time. "It was such a relief," Shawcroft said.
Without the program, she said, the family would have had to pay with a credit card, because they couldn't stand in the way of their daughter's development.
"It's very hard when you get that diagnosis, it's just a shock and it kind of rocks your world," Shawcroft said. "I remember a phase where we were banging pots and pans and waiting for her to blink to tell us she heard something."
The now-toddler is walking and communicating at her level, saying her dog's name, "Mom" and "Dad," and "cracker." She's learning a bit of American Sign Language and her two older sisters are picking it up as well.
"The whole family is learning," Shawcroft said, adding that she's seeking support from other parents with deaf infants and participating in other interventional programs the state offers through the Utah Schools for the Deaf and Blind, which conducts home visits and periodic assessments with deaf children in the state.
"In the back of my mind, there's always this worry that she's not developing normally. I just wonder if we are on par with other kids," she said.
But Evie, she said, is "doing very well. She seems like a very happy little girl."
Eligibility for the program is based on a family's gross income, up to 300 percent of the federal poverty level, and children on Medicaid are not eligible, as Medicaid covers the cost of hearing aids for kids.
The program targets babies and children up to age 3, as that is the most critical time period for language development.
McVicar said there are about 100 babies born with hearing loss each year in Utah and others develop late-onset hearing loss later in life from underlying conditions or illnesses that occur.
Worldwide, deaf babies are often termed "million-dollar babies," as anticipated lifetime care costs could reach that high, McVicar said.
Rep. Rhonda Menlove, R-Payson, said it is "an expensive process for families, at a time when their earning power is at its least."
Menlove successfully sponsored another hearing-related bill, dealing with cytomegalovirus, which can cause hearing loss in children and did in her own granddaughter, who now wears cochlear implants and is working hard to keep pace with her peers.
A portion of the $100,000 allocated for the program has already helped kids from 22 cities within the state at seven participating clinics, but it is well within its budget, as the devices are less expensive than initially anticipated. The result is an increased opportunity to help more children in need, McVicar told the state's Health and Human Services Interim Committee on Wednesday.
She is ramping up outreach and promotion of the program, including information in packets mailed to families of infants who fail the newborn hearing screening, as health worker would like to help the children who can benefit the most and at the youngest age.
"Early auditory stimulation is important or they won't be able to catch up," McVicar said.
Rep. Becky Edwards, R-North Salt Lake, sponsored the original bill, HB157, that created the program and is aiming to file for an extension of the mandate to keep the program going. She said she is encouraged and optimistic about its progress so far. It is slated to end in 2015 without further legislative action.
"I would hate to see it end," Menlove said. Her colleagues on the committee agree, but some would like to see more data before making the program a permanent fixture of the Utah health landscape.
Previous charitable programs have left physicians footing their own bill for overhead costs, but this one is designed to compensate them for their time and expertise, allowing for more respect and support of the program across the industry, she said.
The state's Hearing Aid Recycling Program is still up and running, soliciting used or broken hearing aids from residents that are then recycled and used in Utahns who need them but cannot afford the devices. The downside to it, however, McVicar said, is that patients miss out on leading technology.
So, while Evie may have been able to hear most sounds without hearing aids, they are now helping her hear small sounds like "s" and "t," "and other sounds we take for granted," Shawcroft said.
For more information about the program, visit health.utah.gov/CHAPP or call 801-584-8215.
"There isn't a better time for their brains to grow and develop," McVicar said. "It literally changes their lives to have a program like this."
Shawcroft agrees, calling it a "tender mercy" in her child's life, and she hopes more children and families can benefit from the program in the future.
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