Utah program helps deaf babies to hear

Over a year ago in Salt Lake City, a baby girl named Genevieve “Evie” Shawcroft was born with mild-to-moderate hearing loss; doctors said that she had little chance of developing normally without the help of hearing aids.

The estimated cost of equipment and doctor appointments—$3,000 to $5,000—seemed even more unbearable than the diagnosis, said Ashley Shawcroft, Evie’s mom.

The Tooele family was already facing medical bills on a high insurance deductible resulting from an earlier accidental injury, and hearing aids aren’t even a covered benefit under insurance.

“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, who is a registered nurse, said.

As Shawcroft began to research available resources and charity programs to help their cause, she discovered a Deseret News article about the Children’s Hearing Aid Pilot Program. It was approved by Utah lawmakers in 2013 and is now enrolling children up to age 3 to receive free hearing aids.

Although it is unknown what caused her hearing loss, Evie was approved for the state program to receive a set of hearing aids at about 8 months olds.

Before this point, she was using a pair on loan from her audiologist.

Dr. Stephanie McVicar, a certified audiologist and also the director of early hearing detection and intervention for the Utah Department of Health overseeing the program, said, “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… Without speech and language it isolates the children and really limits them socially and in their learning abilities.”

She added that the sooner the auditory system receives stimulation by hearing, the more prepared 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,” stated McVicar. “Children need to hear words thousands of times before they can process those sounds, before they can say them and put them in to words and then recognize them in written form.”

The Children’s Hearing Aid Pilot Program has given twenty-nine hearing aids to nineteen Utah children, including Evie, and is already halfway through its two-year trial period. The timing was perfect for Evie and her family.

“It was such a relief,” Shawcroft said.

Without the help of this program, Shawcroft said, the family would have had to pay for the expensive equipment with a credit card, because they didn’t want Evie’s development to suffer. “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.”

As a toddler, Evie can now communicate at her level. She can say her dog’s name, “Mom,” “Dad,” and “cracker.” In addition, she’s learning some American Sign Language, and her two older sisters are picking it up, too.

“The whole family is learning,” Shawcroft said. She adds that she’s seeking support from parents who also have deaf infants and attending interventional programs provided by the state through Utah Schools for the Deaf and Blind.

“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,” said Shawcroft.

She also said, however, that Evie is “doing very well. She seems like a very happy little girl.”

Eligibility for this program is based on the family’s gross income, up to 300 percent of the federal poverty level. Because it covers the cost of hearing aids for kids, children on Medicaid are not eligible.

The program targets babies and children up to three years old, since most of a child’s language development takes place during that time period.

There are about one-hundred babies born with hearing loss each year in Utah, McVicar said.

“Million-dollar babies” is a worldwide term for deaf babies, as the anticipated lifetime care costs for a deaf infant could reach that high, McVicar added.

Rep. Rhonda Menlove, R-Payson, said that this diagnosis is “an expensive process for families, at a time when their earning power is at its least.”

Menlove is responsible for sponsoring another hearing-related bill that deals with cytomegalovirus, which can cause hearing loss in children as it did in her own granddaughter, who wears cochlear implants and is working to keep up with her peers.

The money allocated for the program has already helped children from twenty-two cities within the state at seven different clinics, but it is keeping within its budget since the devices are less expensive than initially anticipated. That way, there is an opportunity to help even more children in need, McVicar said to Utah’s Health and Human Services Interim Committee on Wednesday.

Informational packets and other forms of promotion are being sent out to families of infants who have failed the newborn hearing screening.

“Early auditory stimulation is important or they won’t be able to catch up,” said McVicar.

Rep. Becky Edwards, R-North Salt Lake, sponsored the original bill, HB157, that created the program and hopes to file for an extension of the mandate to maintain the program’s running. The program, without further action, is scheduled to end in 2015.

“I would hate to see it end,” said Menlove. Her colleagues agree, but would like to research some more before making the program permanent.

Past charitable programs have left physicians responsible for their own overhead costs, but this program will compensate them for their time and expertise, which will make the program more respected and supported.

Utah’s Hearing Aid Recycling Program continues to receive used or broken hearing aids from residents so they can be recycled and used in those who need them but cannot afford them. McVicar commented, however, that a downside is that patients then miss out on new leading technology.

Without hearing aids, Evie may have been able to hear most sounds, but now, she can hear small sounds like “s” and “t,” “and other sounds we take for granted,” said Shawcroft. “There isn’t a better time for their brains to grow and develop,” McVicar stated. “It literally changes their lives to have a program like this.”

Shawcroft views the program as a “tender mercy” in her child’s life. She hopes that more children and families will be able to receive help from the program in the future. For more information, visit health.utah.gov/CHAPP or call 801-584-8215. 

For the full story here.