Admittedly I'm at the age when family members now and then quip, “Turn up your Beltone, Mom,” after I ask them to repeat something. Most hearing loss occurs as we age, but about two to three out of every 1,000 children in the United States are born deaf or hard-of-hearing, according to the National Institute on Deafness and Other Communication Disorders. The impairment may be due to a genetic disorder, a side effect from medication or toxic substance ingested by the mother, an infection passed from mother to unborn child, an anomaly in the structure of the inner ear or a tumor. In some cases, the reason is unknown.
Today, Indiana hospitals screen all newborns' hearing before they go home. Heather Bremer of Spencerville remembers the day after her son Wyatt, now 8, was born and she and her husband, Paul, were told the baby's screening showed hearing loss.
“They told us, 'It's probably just fluid in his ear. We'll test him again in an hour,' ” Heather Bremer recalls. Today an Otoacoustic Emissions (OAEs) test is given by hospitals. When the cochlea in the inner ear is stimulated by sound, it produces vibrations in the minuscule hair cells in the outer ear canal. The vibrations produce a nearly inaudible sound that echoes back into the middle ear. In the OAEs test, a small probe is inserted into the ear canal to measure the sound. If there is hearing loss greater than 25-30 decibels, emission of the vibration-induced sound does not occur.
“Without that test we probably would not have known for several years. I'm sure his speech would have been delayed, and we would have thought it was due to something else,” Bremer says.
Wyatt, now 6, had follow-up testing by an audiologist that revealed mild loss. He started wearing hearing aids at 7 months of age and received speech therapy. Through the years, his hearing has progressively worsened, but thanks to early detection and speech therapy, when Wyatt began talking, “His speech was above a normal hearing child's speech,” Bremer says.
Even if a baby passes the newborn screening, parents should continually look for any signs indicating hearing loss. When Kendra and DeWayne Kurtz's oldest child, Drew, now 8, was born, he passed the hearing screening, but a different test was used then compared with today. The LaGrange County couple maintained something was not right with Drew's hearing and had him retested at 10 months and 16 months of age.
“We were told he was fine,” Kendra Kurtz recalls. By the time he was 3 1/2 and he was still not talking, they feared he might have autism and had him tested for that. “Within 15 minutes of evaluation, they told us he is not autistic.” They were referred to a different audiologist who did more in-depth testing of Drew's hearing that included an Auditory Brainstem Response (ABR) test. This test gives information about the cochlea in the inner ear and the brain's neuronal pathways for hearing. The test involves placing electrodes on the head and recording brain wave activity in response to sound.
The couple's suspicions were confirmed: Drew has profound hearing loss.
The Kurtz's other children were tested as newborns. Sierra, 6, has normal hearing, as does Emma, 1. But Samantha, 4, failed her newborn screening. She has profound hearing loss in one ear and severe loss in the other. With two of four children deaf from birth, the reason may be genetic. The Kurtzes are undergoing genetic testing now, though there is no family history of similar hearing loss.
Ann Livingston is director of audiology at Ear, Nose and Throat Associates. In Indiana, 94.7 percent of all newborns are screened, with 6 percent to 10 percent of infants having some level of permanent hearing loss, she says. What is concerning, however, is that of newborns identified with permanent hearing loss, nearly 50 percent get “lost in the system,” Livingston says. Follow-up testing by an audiologist is not completed by the parents. The reasons are multifaceted. Some families may lack insurance for the testing or to cover hearing devices. Livingston says very few insurance companies cover hearing aids, even for children, but foundations and organization have funds to help qualified families. Some parents just forget, though hospitals send letters to parents. Others may be in denial that their child could have a hearing disability. It's an issue they will address later on. But Livingston points out, “If you cannot hear properly, you cannot speak properly.”
Wyatt Bremer is proud of his “designer” hearing aids – the current ones are neon green. His dad tells Wyatt because of the excellent hearing he has now, he's going to be the first one to detect a deer when they go hunting.
As for the Kurtz children, both have cochlear implants because hearing aids were ineffective. They do all the things any other child does. Because of their family's experiences, Kendra Kurtz is a Guide by Your Side volunteer, connecting families to resources for their children, including connecting families to others who have years of experience raising a child with hearing loss.
“We're there for their support. It's a hard time when you have a child diagnosed with hearing loss,” Kurtz says. “But I tell my families the sky's the limit. Continue dreaming for your children. The dreams you had before you knew they were deaf remain the same dreams after you find out.”