Story by Vicki Louk Balint • Photo by Daniel Friedman
When her newborn daughter Payton failed a routine hospital hearing screening, Brooke Gammie of Phoenix wasn’t too concerned. “She was only two days old,” says Gammie. “How could the complexity of her hearing be totally perfect hours after birth?”
Two weeks later, when Gammie returned to the hospital with Payton for a rescreening, the results were the same: borderline fail. Payton was scheduled for in-depth testing with an audiologist.
Gammie assumed the cause wasn’t serious—extra fluid in the ear canal, maybe, or perhaps Payton just needed some more development time. “No one ever told me there was potential for her to have a hearing loss,” says Gammie. “Looking back, it probably would have scared the heck out of me.”
Every year about 200 Arizona babies are born with hearing loss; nearly two-thirds of those cases are detected early, says Lylis Olsen, Arizona Early Hearing Detection and Intervention coordinator. Screening newborns for hearing loss has become part of the standard of care in area hospitals.
Two methods are commonly used. The Auditory Brainstem Response test uses tiny electrodes placed on the scalp. Sounds or clicks are played to measure the response from the hearing nerve. The Otoacoustic Emissions test uses a microphone placed in the ear canal and measures how sound waves respond to clicks or tone bursts generated in the cochlea. “It’s really quick and easy,” says Olsen, “and painless.”
The challenge in helping babies with hearing loss depends on what happens after the screening results are determined. In 2005, the Arizona State Legislature passed a law requiring a follow-up process for babies who do not pass an initial screening. Before these guidelines were mandated, says Olsen, 60 percent of the babies who failed their first screening missed an opportunity for a thorough follow-up screening and assessment that culminates in a diagnosis.
Babies who do not pass the initial screening should be rescreened before the age of 3 months, says Olsen. But parents don’t always follow up.
“A lot of times they think, ‘We don’t have any hearing loss in our family, so there’s no risk,’” Olson says. Or they perform “home tests”—banging pots or pans or dropping a heavy book—and think that the baby’s reaction proves testing was flawed. But babies who react to loud, sudden noises may still be missing the high or low frequencies necessary for communication. Or they may simply be responding to movement or vibration.
“Children who have a hearing loss become really good at paying attention to all the other signals,” she says.
What do babies miss if they are born with even a mild hearing loss? Experts say that hearing acuity directly affects the development of speech and verbal language skills—and may also negatively affect social, emotional, cognitive and academic development. That’s why diagnosis and early intervention are critical during that first year for the child with any degree of loss.
“If we can do that,” says Olsen, “their speech and language can develop close to the normal range. It’s absolutely incredible.”
When Payton was just 4 weeks old, Gammie scheduled a full audiology assessment for her at Phoenix Children’s Hospital. She was diagnosed with bi-lateral mild to moderate sensori-neural permanent hearing loss. At just 8 weeks—dubbed her “hearing age,” or the “age at which she was first aided”—Payton began wearing her first pair of extra-pink sparkle hearing aids.
From the assessment, Gammie says, she learned that Payton was not able to access soft frequencies like “f” or “s” sounds. Using advanced software, the audiologist was able to plot her hearing capability and actually play a recorded conversation just the way Payton would hear it without aid.
“It was so powerful,” Gammie says. “From that day forward, I didn’t speak to her unless she was wearing her hearing aids. I couldn’t stomach her not being able to hear every pitch of my voice when I was talking to her. I needed her to hear everything I was saying.”
It comes down to the notion that “children say what they hear,” says Andrea L. Pittman, associate professor of speech and hearing science at Arizona State University. The degree to which the child is impaired affects the clarity of speech, as well as the rate at which he or she learns new vocabulary words.
For children with a serious loss, the evidence might be garbled or mumbled speech. But for those with a mild loss, says Pittman, the clarity of their speech may not be affected. Still, they may be at a disadvantage at building vocabulary as they grow, simply because they’re not hearing new words as clearly or as often as a typical child with normal hearing.
Pittman, who has an interest in studying how children manage multi-tasking skills in the classroom, says that overlooking a mild hearing loss can be very stressful for children as they tend to the business of learning. Unlike the adult who suffers a loss later in life, children don’t know what they are missing.
Finding a professional who understands these differences is key to a hearing-impaired child’s success. “Kids are not little adults,” says Pittman. “I always tell parents to find a really good, competent pediatric audiologist.”
For Gammie, the toughest part of the journey wasn’t the news that Payton would need to wear hearing aids. “The scariest part was knowing nothing about it. Who hears about hearing loss? It was totally off the radar. It came out of nowhere.”
Speech therapy and other services provided by groups for hearing-impaired children, such as Desert Voices in Phoenix, have been invaluable for Payton, who celebrated her first birthday last month.
Learning how to parent a child with a hearing loss and embracing the opportunity to discover Payton’s world have been fascinating, says Gammie. All toys have an auditory component, language is rich and listening exercises are a part of each day.
“We’re very alert to her sounds and noises, and more aware of the babbling and pre-linguistic stages she is going through.” We know she is developmentally on track, and we have the resources to teach us how to be parents of a kiddo with a hearing loss.”
Gammie says she can’t imagine Payton’s life any other way. “It’s all I know. I love her hearing aids. It makes her extra-special.”
Resources for parents
Arizona Department of Health Services Department of Newborn Screening
250 N 17th Ave., Phoenix
602-364-1409 • aznewborn.com
Babies born in a hospital routinely receive screening for 29 disorders, including hearing loss. Parents who deliver in a non-hospital setting should make arrangements with their primary care provider for newborn hearing and additional medical screenings.
Arizona Commission for the Deaf and Hard of Hearing
100 N 15th Ave #104, Phoenix
602-542-3323 • acdhh.org
A statewide information referral center for issues related to improving the quality of life for people with hearing loss.
The Ear Foundation of Arizona
668 N 44th St #300, Phoenix
602-685-1050 • earfoundationaz.com
Provides education, information, research, prevention, intervention and advocacy services for people of all ages who are deaf, affected by hearing loss, at risk for hearing loss or deafness, or have tinnitus or a balance disorder.
Arizona Hands and Voices
866-685-1050 • azhv.org
The Arizona chapter of a nationwide nonprofit organization dedicated to supporting families and their children who are deaf or hard of hearing, as well as the professionals who serve them.
3426 E Shea Blvd., Phoenix
602-224-0598 • desert-voices.org
Offers individualized programs to teach deaf and hard of hearing children speech and language beginning at 4 weeks of age.