A Muffled Life

By Jim Lynch

A Tricycle Mishap

For a 5-year-old a tricycle is a mini Lamborghini. Whether this particular model belonged to my family or our next-door neighbor has long since faded in memory, but what made it especially attractive was fashioned to its handlebar: a rubber squeeze-bulb and silver metal horn. Jackie Gilroy and I took turns riding it between our houses for hours during the summer before I was scheduled to enter first grade. We were particularly fascinated by the sound of the horn, a noise we could make louder by using two hands to squeeze air into the metal chamber.

I can’t remember which of us made the suggestion, but one day we discovered that if we placed our ears next to the horn, the sound was louder still. Therefore, in the impulsive and thoughtless manner of children, we took turns blaring that explosive clangor into each other’s ears at point blank range for a good part of the afternoon. We laughed at our discovery and discovered that the effect lasted even longer, with ringing in our ears.

When I woke the next morning and came downstairs, my mother was at the stove finishing scrambled eggs for my breakfast. As she put my plate before me, I saw her lips moving, but I heard nothing. I put my hands to my ears and began to cry as she tried without success to converse with me. Not only couldn’t I hear her, but I also couldn’t hear my own words, or even the sound of my crying. Overnight, I had become completely deaf.

Facing It

Over the next few days, some muted hearing gradually returned. After I informed her of my squeeze-bulb horn activity, she made an appointment for us with an audiologist. After explaining to him what I had done, and undergoing what passed for extensive testing in midcentury (I remember a series of tuning forks and having to turn my head at various angles and respond to his whispered questions), he informed her that I had permanently damaged the nerve endings at the higher frequency range of hearing in both ears. I remember him telling her that what had happened to me was akin to a soldier’s hearing when a grenade goes off in close proximity. While I didn’t suffer physical injury, the hearing loss was the same.

Even if there were hearing aids available during that era, two things became readily clear: my family would not have been in a financial position to afford them, and, given the type of hearing loss I had sustained, they wouldn’t have helped. Whatever the quality or degree of auricular attenuation I had sustained, it was permanent, and would last for the rest of my life. At five years of age, however, I was simply happy to have regained a measure of hearing. Whatever consequences suffered by Jackie Gilroy are lost to memory.

At that point in my young life, I had little trouble understanding my parents, siblings and friends who were in close proximity. They sometimes had to get my attention if my head were turned (my brothers would often yell, “Hey Beltone!”), but face-to-face conversation was possible. Even so, my parents decided to postpone enrolling me in first grade that September, with the hope that things might somehow improve before I would need to function in a classroom environment.

Starting first grade a year later, I began a long auditory adjustment that paralleled any and all social interaction. My hearing difficulty often appeared to teachers and fellow students as indifference, disrespect or stupidity. High-frequency loss also made it impossible to hear the syllables of some words, and therefore difficult to pronounce them as well.

The “ed” on the past tense of “ask,” for example completely disappeared. Sibilant syllables vanished from spoken words, and the susurration of whispers made them indecipherable. Embarrassment and mockery are stern but effective teachers, however, and they provided remarkable motivation for a trial-and-error approach to the demands of a wider world.

And Faking It

I soon ascertained that there were many compensatory methods to bring to bear on my degraded hearing. I quickly learned, for example, that the first hint of what others were saying lay in their facial expressions. A frown, scowl or smile provided a starting point for what was to come.

Tone of voice was also a powerful indicator. A flat, staccato grouping of words coupled with a stern expression were causes for apprehension, while a soft, lilting tone combined with an open face often indicated harmony or agreement. If a speaker’s inflection turned up at the end of his sentence, he was likely posing a question.

I further adapted to a system of filling in the gaps when some of the words in a sentence went unheard because of distance, volume or pronunciation. “In what____ was the _______Armada ________ by Great _______?” From the back of the class, such an obvious question (upward inflection at end of sentence) could be understood in sufficient time by a student with hearing loss who had read the assigned history chapter. Those strategies worked with a modicum of success in a classroom where one person spoke at a time. In a noisy environment, however, sounds grew more remote and understanding more problematic.

When as an adult I had an extensive and more sophisticated evaluation done by an audiologist, I discovered that my hearing levels were 70% of normal in the left ear, and 72% in the right. Because of years of adapted strategies, however, my range of understanding registered in the low 90% level for both ears in a quiet, isolated environment.

Lingering Difficulties and Treatment at Last

Nevertheless, song lyrics and movie dialogue continued to pose problems. Because the usual strategies often failed in such circumstances, I often relied on imagination to provide meaning. With resourceful creativity, I used the melody of songs, and the tone of cinematic dialogue, as well as body language of the actors, to provide sufficient clues to the overall context of songs and movies. I sometimes think that my imagination provided better lyrics and dialogue than the lyricist or scriptwriter.

Not until 2005 did technology become available to augment my adaptive methodology. The devices I now use improve my hearing marginally, but I still rely on a lifetime of learned maneuvers to interact with others. Although the sounds of previously difficult sibilant syllables became somewhat crisper, other problems remain or were created.

A moderate wind sounds like a typhoon when it blows over the device’s microphone. In addition, ambient noise levels can still totally negate any level of discernment. At a social gathering such as a wedding reception, for example, the murmur and babble of guests make understanding people directly across a table hit-and-miss. When the band or DJ begins, I must cease conversation altogether, except to respond to the person to my immediate right or left, and then with considerable difficulty.

In the classroom, my disadvantage created a different approach to interaction with students. Because I was fortunate to teach in an atmosphere of deference and tranquility, the majority of conversations with students proceeded nicely. Sometimes, however, soft-spoken or rapid-speaking students, or those in the rear of the class could pose problems. If a request for a repeated question or comment failed to generate clarity, years of learned compensatory techniques usually facilitated sufficient comprehension.

It Made Me a Better Teacher

In retrospect, I suspect that my auditory deficit, and the changes it wrought, made me a better teacher than I would have been with typical hearing. Because I had to utilize alternate methods and techniques (with a visible keenness of focus) to interact with students, my interest in their opinions and evaluations must have conveyed an unusual intensity. As I strained to comprehend their questions, concerns and comments, my physical demeanor emphatically registered the genuine value I placed on understanding their questions and comments in class discussions.

While a reduction in the ability to hear does not rise to the level of a significant physical disability, it changes the manner in which one must approach life. Such changes, although onerous, can also foster unforeseen advantages. My career as an educator was predicated on an adaptive approach to classroom procedure and management. Without a youthful hearing injury, I may not have gravitated toward teaching at all, or have enjoyed four decades of participation in that noble profession.

Jim Lynch was a high school English teacher for nearly four decades in the Wilkes-Barre, Pennsylvania area, as well as an adjunct English instructor at area universities and a community college. In retirement, he resides in Fleetwood, Pennsylvania with his wife of 51 years and two cats.

The Happiest Baby—With Noise-Induced Hearing Loss

By Nadine Dehgan

Nothing in my life compared to giving birth and being able to hold my heart in my arms. As most sleep-deprived new parents will attest, there also is nothing quite like the helplessness you feel when this tiny person whom you love more than anything won’t settle and continuously cries (after being fed, changed, swaddled, and is fever-free).

Before my oldest daughter was born I thought I was well-equipped to be a parent. I had always been around children, was the second oldest of six children, became an aunt at 19, had a strict  pediatrician, took my parenting class seriously—and read “The Happiest Baby on the Block,” a best-selling book by Harvey Karp, M.D., recommended to me by other new parents.

Nine years later, it has been brought to my attention Karp’s ardently recommended action of “shh-ing” my daughters is extremely damaging to an infant, or any human. He advises the “shh-ing” sound needed to activate a crying baby’s calming reflex is a rough, rumbly whoosh noise that is as loud as your infant’s crying. This is at least 115 decibels (dB), according to Oregon pediatric audiologists Heather Durham, Au.D., and Shelby Atwill, Au.D. Alarmingly, sounds over 80 dB for an extended period of time are damaging and anything greater than 100 dB for even a few minutes can cause permanent noise-induced hearing loss (NIHL).

NIHL is an epidemic for American children—one in five are estimated to have significant hearing loss before the age of 20. I wonder how many children suffer from NIHL as a result of well-intentioned parents who relied on this harmful advice.

I remember reading I could put my daughters at ease by putting my mouth close to their ears and making a strong “shhhhhhhh” noise. The sound of someone’s forceful “shhhh” directly in your ear can actually be painful. (Please do not try it!) Babies have super hearing—the best hearing humans will have in their lives is when they are first born. I shudder to think how loudly I was “shh-ing” my daughters to sleep. The louder they cried, the louder I “shh-ed,” thinking I needed to do more to soothe them as I had learned.

A new grandparent and supporter of Hearing Health Foundation (HHF) recently alerted me to this danger, and after testing the decibels of my so-called soothing “shhh” sounds, I immediately had a pit in my stomach because indeed the noise is loud—dangerously loud. I had “shhh-ed” my daughters for countless nights and naps. White noise machines (usually in a stuffed animal) placed right near a baby’s head can be equally dangerous.

Like sun exposure, loud noise exposure has a cumulative effect; it could be that “inevitable” age-related hearing loss is merely the result of a lifetime of living in our noisy environments with unprotected hearing. Parents with newborns who are difficult to calm down need another, less risky option for inducing sleep, one without lifelong consequences.  

My Magic Ear Kid

By Joey Lynn Resciniti

Julia was a full-term baby born exactly one week before her due date. She was healthy and perfect. She passed her newborn hearing screening.

The hospital bassinet had a cabinet underneath where the diapers were stored. If I wasn’t very careful with the doors, they would slam loudly. Julia would startle and cry.

At least she can hear, I thought. This would prove ironic to me when Julia showed signs of having problems hearing. When Julia was 15 months old, I became concerned with her speech—or its lack. She’d babbled a little bit as an infant and then didn’t say much until at a year or so when she said hi, once.

No one wanted to admit there was a problem. My husband was even a little defensive about the subject. Grandparents chimed in that she was just a “late talker.” When I mentioned my concerns to the pediatrician, he recommended the state’s early intervention program, which led to our qualifying for twice-weekly speech language pathologist visits.

All this time, no one suspected Julia wasn’t hearing. With the specialist’s help, small gains were made in her speech. She developed a vocabulary of a few dozen words but never progressed to speaking two-word sentences or multisyllabic words.

So by the time we made it to the audiologist over a year later, when she was nearly 3, I had come to terms with Julia having some level of hearing loss. I knew when she turned her back to me, she wouldn’t respond if I called, and that was a big sign to me.

A Series of Tests

Sitting on my lap in the soundproof booth, Julia turned toward the speaker that was making a loud sound. But as the sounds got quieter, I got a heavy feeling in my stomach. She stopped turning toward the speaker. Finally the audiologist leaned into the microphone and told me she was coming over to our room. I willed myself not to cry as she said she’d found a moderate hearing loss in both ears.

The audiologist next used little headphones to transmit sound directly to Julia’s auditory nerve. The results showed Julia’s hearing loss is sensorineural, a nerve problem, and not a mechanical problem like a tube that is too small in the ear. I was told that it is not uncommon for a newborn to pass a hearing screening, like Julia did, and then find something later. The audiologist reassured me that we’d found it sooner rather than later, and that intense speech therapy would catch her up.

The next few months were tough. We scheduled an auditory brainstem response (ABR) test. For this test, the audiologist sedates the child and plays a series of clicks while measuring brain activity. This test is often done for young children to confirm their hearing loss before they’re fitted for hearing aids.

Our family was not ready to accept the first diagnosis and kept questioning the results. But I was with Julia in the booth, and knew it was correct. So when the ABR confirmed the hearing loss, I set to work managing the appointments and paperwork that would eventually help my daughter speak and thrive.

The first thing the audiologist showed us after the ABR testing was the “speech banana.” This was a confusing bit of information at first—banana? Speech? The speech banana is a visual aid for a very quick introduction to hearing loss and the varying levels of severity.

Normal hearing is in the 0 to 20 decibel (dB) range at the top of the banana. All speech sounds (vowels as well as consonants and consonant pairs) are above where Julia can hear with her 55 dB loss. Theoretically, without hearing aids she can’t hear any of those sounds.

Things louder than 55 dB, like a dog barking or a piano, would be accessible for her without hearing aids. But the tricky part is that it isn’t so cut and dry. Julia wasn’t unable to hear all language, and she also wasn’t always able to hear dogs barking.

Instant Change

We ordered hearing aids and earmolds. The audiologist showed us how to insert the tiny size 13 battery and talked to us about school accommodations and speech therapy as she programmed the little hearing aids for Julia’s specific hearing loss.

I’d thought about the moment she’d first hear with her new hearing aids. It was going to be the first time she’d hear my voice. Maybe the first time ever. I wanted to say, “I love you.” I wanted to say something nice, something comforting.

The audiologist worked the molds into her ears and clicked the battery doors shut. Julia’s eyes opened wide and her hands clenched on the arms of her chair. She could hear—and she was terrified!

“These are your new magic ears,” the audiologist said.

I didn’t say anything nice or comforting. I couldn’t help myself, I started to laugh! She looked so adorable, like she was on a roller coaster rather than an office chair. I forgot all about making a grand first speech and instead just beamed at her. Julia’s head swiveled to the ceiling. I noticed an obnoxiously loud fan for the first time.

On the way home, Julia tried to repeat just about everything we said. She could hear above the banana, all the vowel and consonant sounds. She began mimicking speech immediately. Every noisy thing that I had never taken the time to notice before was new and interesting.

We were warned that it might be difficult to get Julia to wear her new magic ears. The audiologist told us to be very firm so she wore the devices during all waking hours. If she tried to take them out, back in they went.

Eventually, at age 5, Julia learned to insert her hearing aids herself, with the promise of a sleepover once she could show responsibility. She began to take ownership of the aids, poring over earmold colors and designs (striped, swirled, polka-dotted) with the practiced eye of a stylish tween (she wasn’t yet 8). She became a connoisseur of the hand-shaped earmold (great) vs. one that is made through an automated process (not so great).

Responsibility Shifts

As time goes by, those early years begin to fall into their proper perspective. I used to think it would mean something to me if Julia could someday tell me that she heard me when she was a toddler. Time and distance have shown that she doesn’t remember much of anything from her prelingual years. Her memories start when she was about 4. Everything prior to that comes from pictures and videos.

Some of the videos, like one when she is about 2 showing her fascination with lightning bugs, are painful for me to watch. In the video, you can hear me prompting Julia to say the word “bug” over and over, and watching it now I see plainly that she is confused and cannot hear us saying the word.

I wish I’d realized back then that she needed help. I wish I hadn’t spent a whole year frustrating myself and my baby. If I had to do it again, I would tell myself to get her hearing tested. And also that she was going to be okay and that in three short years she’d be saying so much more than “bug.”  

Life with a 13-year-old hearing aid user is much easier. Julia is an independent seventh grader who gets straight As. We have as a family weathered ear infections with the potential to wreak havoc on a spelling test, late-night searches for a hearing aid battery among tangled twin sheets, and hearing aids that can’t be worn in the pool.

Now there are whole chunks of time when I don’t think about her ears, a blessing made possible by experience. We agonized when Julia’s hearing ability dropped another 15 dB to 70 dB, putting her in the severe category, and feared her hearing would progress even more, but it did not.

At the very first diagnosis, the ENT (ear, nose, and throat specialist, or otolaryngologist) assumed Julia’s loss is genetic, but the markers haven’t been discovered yet. The overwhelming majority of children with hearing loss—more than 90 percent—have typical hearing parents. We just don’t know.

Years later Julia’s audiologist explained the drop: “Sometimes with a change in a child’s ear canal size, it may seem as if there is a 10 to 15 dB change in hearing across the frequency range. As the ear grows, a little more sound pressure may be needed to detect sound. This will result in what looks like a change in hearing but may just be growth of the ear canal.” This makes sense. After eight years of steady audiograms and this explanation, I am finally able to let go of those lost decibels and my fear of losing more.

Every now and then there’s a head cold, dead battery, or damaged bit of ear tubing, and I am once again that younger mother, riddled with anxiety about taking care of Julia’s hearing. But the shift in responsibility has become hers. Julia is the one taking the lead on troubleshooting her technology at home, school, the pool, wherever she goes. At 13, she is the one always needing to think about her ears. Perhaps that’s what we’ve been working toward all along.

This article originally appeared on the cover of the Summer '18 issue of Hearing Health magazine with a supporting story from Julia Resciniti  

How One Institution is Changing South Africa’s Approach to Pediatric Hearing Loss

By Vicky Chan

Carel du Toit Center (CDT) has been at the forefront of hearing loss education for the past 45 years—offering a mainstream education and speech development programs for children aging from infancy to 10 years old in Cape Town, South Africa. Although an estimated 6,000 babies are diagnosed annually with permanent bilateral hearing loss in the country, early detection and intervention programs are extremely uncommon. CDT is one of the only institutions in the area that offers an early intervention program for children with hearing loss and their parents.

A young student with hearing loss. Credit: Carel du Toit.

Because the damaging effects of hearing loss are widely dismissed by South African legislation, 72% of the nation’s hospitals do not offer any form of hearing tests and fewer than 1% plan to implement newborn hearing screenings. Consequently, 90% of newborns do not have access to a hearing test and families do not receive information about pediatric hearing loss.

Hearing loss is usually detected only after the child’s caregiver notices unusual behavior or speech and language delays. The average age of diagnosis for a child with hearing loss in South Africa is 31 months old, and the typical age at which one is first fitted with hearing aids is 39 months. This is well beyond the critical time period for a child's speech and language development, which depends immensely on the brain’s responses to hearing in the first two years of life.

To help parents understand their child’s hearing loss, the school provides a family-centered early intervention program in their CHAT (Children Hear And Talk) Centre. Coaching families about how to cope with hearing loss is a key component in teaching a child to talk. Parents are encouraged to attend weekly sessions at the CHAT Centre where they are taught to incorporate speech into their family’s daily routine so their child can continue to develop language and social skills at home. The CHAT also provides weekly sessions for children who are too young for school so they can be enrolled in an early intervention program as soon as possible.

“This is your journey with your child and you are absolutely equipped to teach your child to talk through listening,” one teacher says of CHAT. “It may not have been what you were expecting—but embrace it.”

The school employs more than 60 staff, including teachers, early interventionists, social workers, audiologists, psychologists, and speech therapists, who strive to create a natural environment that promotes listening experiences and intensive speech training. Students are fitted with the appropriate hearing technology and learn with the support of the school staff and their parents.

“I had a passion for special needs children and ended up in deaf education,” reflects an CDT educator. Echoing this sentiment, another teacher comments, “Teaching a child a new word or concept everyday makes it very rewarding. You are changing their lives on a daily basis.”

CDT understands that early diagnosis and intervention is the cornerstone for obtaining the best outcome for infants with hearing loss, which is why the center also partners with social services and South Africa’s State Health Department to provide equipment and personnel to test high-risk babies in the largest hospital in West Cape. With a mission to ensure all children in South Africa can function optimally in a hearing world, CDT is making strides to change outcomes for those with hearing loss nationwide.

For more, visit http://careldutoit.co.za/.

The Listening Project

By Vicky Chan and Lauren McGrath

“Most people still assume that if a person is deaf, they’re not able to speak,” narrates Jane Madell, Ph.D., in the opening moments of her documentary film “The Listening Project,” released in March 2018. Her statement sets the tone for the following 38 minutes of personal stories that shatter stigmas about hearing loss.

A New York City-based pediatric audiologist, speech language pathologist, and auditory verbal therapist, Madell created the documentary with award-winning filmmaker Irene Taylor Brodsky to reveal how technology has improved communication—and life—for people with hearing loss.  

Richard, a cochlear implant recipient, is one of the participants in "The Listening Project" who works as a software engineer.

Brodsky captured interviews of 15 individuals with hearing loss, most of whom Madell treated when they were children. Madell says filming  allowed her to reconnect with her former patients to “see what they had to say about growing up with a hearing loss and what advice they might have for parents of newly identified children with hearing loss.”

The subjects of “The Listening Project” are vibrant young adults living and working all over the world—connected by their gratitude for the technologies and treatments that enable them to hear and talk. The majority are cochlear implant recipients, while the remainder wear hearing aids. They experienced similar anxieties, including not being able to hear everything in social settings, disclosing hearing loss to new acquaintances, and accepting their hearing loss.

If not for modern medical progress, the film’s subjects may not ever have been able to overcome these hurdles. When Madell began her career in audiology 45 years ago, hearing loss treatments were very restrictive. Only children with mild to moderate hearing loss could hear well with hearing aids, and the Food and Drug Administration had not yet approved cochlear implants. Such limitations challenged Madell emotionally early in her practice. Though she smiled and appeared optimistic in front of her patients and their families following a hearing loss diagnosis, she knew how hard they would need to work with inadequate accommodations for their children to succeed.

Madell’s former patients and millions of others are fortunate  changes in hearing technology and policies in recent decades have been dramatic. “We are so lucky we live now and not 30 years ago, 40 years ago,” says one. Another young man adds that the ability to communicate and feel comfortable doing so is “a core human value.” Advancements have made it possible for children with hearing loss to learn spoken language, which Madell believes is critical for educational, social, and professional development and gives them options they would not have otherwise.

Madell hopes the personal stories in “The Listening Project” will help parents of newly diagnosed children, as well as legislators, educators, and healthcare workers. “Parents of children with hearing loss have told me that if they had seen the film before the diagnosis, it would have been easier to deal with,” she says. It shows parents that with the resources and hearing technology available today, hearing and speech are possible for every child.

To learn more about the film for either personal or educational use, visit thelisteningprojectfilm.org.

Is It Overstimulation?

By Eric Sherman

My younger son Cole has been wearing cochlear implants (CI) since 2005. He was barely a toddler, between 18 and 24 months old, when he rejected them.

The initial response from our audiologist was, “We just mapped your son, just do your best to keep the processor on his head.” Unique to every CI wearer, mapping adjusts the sound input to the electrodes on the array implanted into the cochlea. It is meant to optimize the CI user’s access to sound.

But after several weeks, and our audio-verbal therapist told us there was something wrong and referred us to another pediatric audiologist, Joan Hewitt, Au.D.

Eric Sherman and his son, Cole

We learned that refusing to wear CI processors is generally a symptom of a problem that a child can’t necessarily express. Their behavior becomes the only way to communicate the issue.

“Our brains crave hearing,” Hewitt says. “Children should want to have their CIs on all the time. If a child resists putting the CIs on in the morning, cries or winces when they are put on, or fails to replace the headpiece when it falls off, there is a strong possibility that the CIs are providing too much stimulation. Some children appear shy or withdrawn because the stimulation is so great that interacting is painful. Others respond to overstimulation by being loud and aggressive.” 

Hewitt says research discussed at the Cochlear Implant Symposium in Chicago in 2011 (or CI2011, run by the then-newly created American Cochlear Implant Alliance) addressed the issue of overstimulation. A study that was presented, titled "Overstimulation in Children with Cochlear Implants," listed symptoms that indicated children were overstimulated by their cochlear implants: reluctance or refusal to wear the device, overly loud voices, poor articulation, short attention span or agitated behavior, and no improvement in symptoms despite appropriate therapy.  

When the researchers reduced the stimulation levels, they found very rapid improvement in voice quality and vocal loudness and gradual improvement in articulation. Finally, they found “surprising effects on the children's behavior”—the parents reported a marked improvement in attention and reduction in agitation.

In “Cochlear Implants—Considerations in Programming for the Pediatric Population,” in AudiologyOnline, Jennifer Mertes, Au.D., CCC-A, and Jill Chinnici, CCC-A, write: “Children are not little adults. They are indeed, unique, and to address their CI needs, they require an experienced clinician. Most children are unable to provide accurate feedback while the audiologist programs their cochlear implant and therefore, the clinician must take many things into account.”

These include:

1. The audiologists' past experiences with other patients

2. Updated information regarding the child's progress (from parents, therapists, and teachers 

3. Audiometric test measures

4. Observations of the child during programming

5. Objective measurements

6. If age appropriate, the clinician will train the child to participate in programming

Many of the decisions made during programming appointments come from the clinician's knowledge and experience, rather than the child's behavioral responses. But your child’s reactions should also be taken into account.

If your child continues to refuse to wear their processors after a remapping, take into consideration your audiologist’s experience and mapping approach and seek a second opinion. When we met with Hewitt, she found our child’s map was overstimulating. Once she remapped using a different approach, our son had no problem wearing his CI processor again.

Los Angeles marketing executive Eric Sherman is the founder of Ci Wear, a patented shirt designed to secure and protect cochlear implant processors. April is National Autism Awareness Month. Read about how Sherman and Cole manage Cole’s hearing loss and autism spectrum disorder conditions in  “When It’s Not Just Hearing Loss” in the Fall 2016 issue of Hearing Health.

The Power of a Mother’s Advocacy

By Vicky Chan

Like most moms, Brandy has always been a champion for her three sons, Anthony, 12, Andersyn, 10, and Ayden, 7. Her sons are unlike most sons; each has bilateral sensorineural hearing loss and enlarged vestibular aqueduct syndrome.

Brandy’s journey as a parent-advocate had a difficult start. She was completely unfamiliar with hearing loss in children before she became a mother, and accessing proper treatment for the trio was a challenge. Brandy juggled numerous audiologist appointments that were a five-hour round-trip drive from home. And, for her oldest child, Anthony, a hearing loss diagnosis came two years delayed.

Clockwise from left: Ayden, Andersyn, Anthony, and Brandy.

Anthony had typical speech development and passed all his first- and second-year wellness and hearing checks by his pediatrician. When he was 2, Anthony fell and hit his head. Brandy suspected the trauma had caused either hearing loss or a cognitive disorder, but the doctors assured her Anthony suffered no permanent damage and took no action for him.

Brandy’s instincts were correct. When her second child, Andersyn, was diagnosed with hearing loss at birth a few months after Anthony’s head injury, she insisted Anthony receive a detailed hearing evaluation. Born in 2005, Anthony never received a newborn screening despite the passage of the Newborn and Infant Hearing Screening and Intervention Act of 1999, which mandated the practice.

The legislation quickly improved the rate of newborn hearing screening. In 2005, 94.2% of babies in the U.S. were screened, but some states lagged behind. In Tennessee, where all three of Brandy’s sons were born, only 66.9% of newborns were tested—the lowest in the nation. Unfortunately, Anthony was among the 30.1% of Tennessee’s babies not screened. However, by Andersyn’s birth in 2007, the state’s rate increased to 91%. It was only due to Brandy’s perseverance that Anthony was ultimately given a comprehensive exam, diagnosed with severe bilateral hearing loss, and fitted for hearing aids.

Brandy’s message is that newborn screening is vital. “If your child has hearing loss, it is best to start intervention as soon as possible and have your child fitted for hearing aids or cochlear implants if they need them.”

With his hearing aids, Anthony was fascinated by all the new sounds he could hear—including the squishy sound of Brandy’s flip-flops as the pair walked through a parking lot. At that moment, Brandy realized it was likely that Anthony, like Andersyn, was born with hearing loss, but it only became detectable to her after his head injury.

Andersyn was given a newborn hearing test so Brandy knew immediately that he had severe bilateral hearing loss. Later on, one audiologist suggested he wasn’t benefiting from his hearing aids, but Brandy knew differently; with Andersyn’s hearing aids turned up, a sound as subtle as crinkling paper near his ears would startle him. Andersyn now does exceptionally well with hearing aids, as does Brandy’s third and youngest child, Ayden, who was also born with severe hearing loss in both ears. The boys’ doctors have cited a genetic connection of unknown cause.

Today, hearing loss is an ordinary part of life for her three boys, thanks to Brandy’s tireless advocacy. With help from FM systems and speech therapy, Anthony, Andersyn, and Ayden all receive a mainstream education. They enjoy baseball, basketball, hunting, swimming, riding four wheelers, and fishing. HHF’s CEO, Nadine Dehgan, exclaims, “All three boys are incredibly fortunate to have Brandy, a devoted mother who has prioritized their hearing health.”

Anthony, Andersyn, and Ayden are participants in HHF's "Faces of Hearing Loss" campaign.

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Helpful Tips for Parents of Children With Hearing Loss

By Nadine Dehgan

You just learned your child has a hearing loss. It is common (and normal!) to feel overwhelmed, scared, and have many, many questions. Hearing loss is a loss. It’s not uncommon to grieve after receiving a diagnosis. Take some time to come to terms with the news, and know that there are professionals ready to help and there are many resources at your disposal. There are also countless families who have gone through this same experience and have found success.

Here are some helpful tips Hearing Health Foundation cultivated from parents just like you:

Accept your child and cherish them for who they are as a person. This will encourage your child to accept themselves and their hearing loss, providing them with the confidence and assurance that they will be accepted by their peers and community, despite their hearing loss.

Help your child develop a fun, but informative, answer to educate their friends and others about their hearing loss and assistive devices, should they ask when you’re not around. This will help them develop self-advocacy skills they will need later in life.

Discussing your child’s hearing loss with their siblings may be something you dread. Simple is key. Let them ask questions and answer them as honestly, and positively as possible.

If your child’s chosen method of communication is sign language, make lessons a family activity, if the rest of the family communicates orally. It’s important that your child with a hearing loss feels and is included in all conversations, especially those taking place in the household.

Ask your child’s audiologist for recommendations for a speech pathologist, education consultants, and materials to set up your child for success. (*Laura, HHF’s communications and programs manager, mother used and was very thankful for the free resources from the John Tracy Clinic).

If your child is school-aged, set up a meeting with the school district’s Department of Special Education Services and start the Individual Education Plan (IEP) process. Cultivate and maintain the relationships made with Special Services—your child’s academic success depends on it.

• Know the laws related to disabilities and special education, so you’re properly equipped to be your child’s best advocate.

• Have regular check-ins with your child’s teachers to identify any gaps and ensure they are developing appropriately for their age, both socially and academically.

Have a folder/binder and notebook where you house all the paperwork of test and reports, dates of appointments and procedures. This would be a good place to keep any and all hearing aid, BAHA or cochlear implant warranty information.

• Hearing loss accidents happen and sometimes you just have to laugh them off: When Laura was in kindergarten, she used to take a bath after dinner, and her mother would scream down the hall, “Take out your hearing aids!” One day, she forgot to remind Laura, and into the bath those hearing aids went!

• Take issues that arise from bullying and other social incidences and turn them into a life lesson about diversity and that being unique is not a bad thing, but something to embrace.

If you’d like to connect to others going through similar situations, or with those who have dealt with these circumstances before, please email us at info@hhf.org. We also encourage you to check out our Pediatrics page for more information and tips.

Nadine Dehgan is the former CEO of Hearing Health Foundation.

The mother of two boys who use cochlear implants, Alaine Jacobs shares “10 Ways to Be Encouraged When You’re Disappointed by a Hearing Loss Diagnosis” on her blog.

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