The Miracle of the Cochlear Implant

By Barbara Sinclair

Barbara and her husband, Charles, who also has a hearing loss, in 2004.

My mother didn’t realize I couldn’t hear until one afternoon when I was about 3 years old. I was happily playing on the floor with my younger brother. Suddenly I glanced up and saw Tex looking at Mother, who had clapped her hands. Not hearing any noise, I didn’t respond. Frantic with worry, Mother called Daddy telling him I couldn’t hear. She then took me to the doctor. No wonder I was slow in talking! Sound meant nothing to me. I didn’t know that I needed to talk to express feelings.

A teacher trained at St. Louis’s Central Institute for the Deaf taught me how to speak and read lips at home in Cleveland. I never heard a sound until I got my first hearing aid around age 9. The earliest audiometric evaluation I still have is from 1984, when I was 55, and it showed a profound hearing loss in my right ear. My left ear was even worse, termed “dead.” With training in speaking and lip-reading (speech-reading), I stayed in a mainstream school with the help of a hearing aid, although I really depended on lip-reading to get by. The hearing aid gave me a sense of being able to communicate, but it didn’t help much when it came to understanding speech.

I imagine anyone born with a hearing loss doesn’t always understand why they can’t hear. Many times I had wondered this myself. My doctors are also unaware of the cause. I speak a little differently, with a metallic sound and slight accent, sometimes accenting the wrong spots as I speak. However, this did not impede school or, later, work. After I graduated from Arizona State University, I held jobs in bookkeeping, the library, and human resources.

Sounds such as shouting, banging, ringing, and clanging all sound the same to me. What does a ticking clock sound like? Tap-tap, or click-click? Or running water? To me, these sound the same. I can’t hear the wind rattling the window. I feel it. I can’t hear the fury of a rainstorm. I feel it.

It’s hard for me to detect changes in speech tones or pitch, or to tell a low voice from a higher one. I read that a child’s laughter is like the delightful rippling of a water stream. I can’t identify that sound. But even though I can’t enjoy music or follow group conversations, there are some advantages to not hearing—I sleep without any interfering noises.

In 2001, our audiologist mentioned cochlear implants to my husband Charles, then age 72, who also has a hearing loss as well as being blind from retinitis pigmentosa. I researched cochlear implants and found this description from ABC News. It dates from 2001 but is still accurate today: “For those with normal hearing, sound enters the ear, triggering hair cells in the cochlea, a spiral tube filled with fluid. Those excited hair cells send information to the hearing nerve, which sends signals to the brain, allowing us to hear.

“But, if deaf people have damaged hair cells in their cochlea, an implant can also do the same work. With an implant, sound is picked up by a tiny microphone connected by a cord to a small box outside the ear. The box turns sound into a signal—transmitting it through the skin, straight into the skull. Electronics in the skull send the signals straight to the hearing nerve, bypassing the cochlear hair cells that don’t work.”

We went to see Wesley Krueger, M.D., an otolaryngologist in San Antonio. After a series of tests, Dr. Krueger told Charles that his hearing wasn’t actually severe enough to be a candidate for an implant. He was stunned for a minute, and then asked the doctor if there was a possibility for me to get an implant. Then it was my turn to be stunned.

Weeks later, following my own series of tests, Dr. Krueger came into the room, grinning, and announced, “You are a candidate for a cochlear implant!” I was speechless as he showed me the components of “the bionic ear”: the external hearing aid-like processor and transmitter; the receiver under the skin that connects to electrodes; the magnet that holds the implant in place on the skull.

I had the surgery a month later, when I was 72 years old. A week after the bandage from my right ear was removed, I felt dizzy, but there was almost no pain at all. I then realized that the implant made me unable to hear with my hearing aid. Whatever hearing I had was gone.

For 30 days I agonized whether I’d be able to hear. The incision behind the ear must heal for that period before the bionic ear can be activated. Then, finally, activation day came—and was successful! There were beeps and squawks, but I could hear! Relief enveloped me as I progressed through the programming of the device. Sounds were distorted and muddled, but they were all new to me.

It has been 17 years since the implant. My device has been reprogrammed again and again until clarity reached its peak. I still don’t understand speech perfectly, but I do hear sounds I had not heard before: a ticking clock, running water, a humming car motor—and yes, the laughter of our four grandchildren.

Barbara Sinclar lives in Texas. She is a Faces of Hearing Loss participant. 

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  

Challenges: A Sibling’s Perspective

By Joe Mussomeli

Everyone has challenges in their life; they can be small or big, but they’re still challenges. My brother, Alex, was born with severe hearing loss—the first in my family to have the honor.

Alex’s diagnosis marked the start of very stressful period for our family. It took some time for my mother to process his hearing loss, but both of my parents quickly recognized the importance of helping Alex get access to sound as soon as possible. They equipped Alex with hearing aids before three months old and our journey began.

I don’t remember too much of the details, as I was only two years old at the time, but I was told that my parents spent many nights with Alex, practicing the sounds of letters, and making sure he could distinguish and pronounce each of them correctly.

What I do remember is initially feeling left out as a little kid. At first, all of my parents’ time was occupied by Alex. At 15 years old, this is understandable to me now, but as a little kid it wasn’t. My parents picked up on my feelings and began to make sure I wasn’t left out. They did their best to make sure I was involved and helping Alex. They taught me how to practice sounds with Alex, how to change his hearing aid batteries, and most importantly, how to be there for him when he needed me most.

Today, whenever I think of my brother Alex, I rarely think about his hearing loss. I almost always think of him as just Alex—not Alex with hearing loss or anything like that. I’ve almost always treated him the way any other older brother would treat their younger brother. We roughhouse, tease each other, laugh together (mostly at each other), and most importantly, we care for each other.

Alex has been in my life so much that by now I barely notice his cochlear implant on his right ear, or his hearing aid on his left. To me, they’re just ears, just like Alex is just Alex.

But there are certain times when his hearing loss is very evident to me, like when he takes off his hearing aid and implant and can’t hear my mom call him for dinner or answer a question I might ask him.  

These moments by now are part of our daily routine. They’re small and I don’t think about them often, but when they happen, they remind me how lucky I am. How I’m able to hear our mom call us for dinner without devices. How I can tell my dad I love him back when he says it, without taking the time to put on a hearing aid or implant. Thinking about this doesn’t make me pity Alex, it makes me admire him. I admire his strength and I admire how he doesn’t let hearing loss bring him down.

Alex’s hearing loss started out as a struggle, but it wound up bringing my brother and me closer together. I wouldn’t be as close with Alex as I am today if I never helped him overcome the challenges he faced with hearing loss. Challenges are tough and hard to deal with at times, but overcoming those challenges are even harder. If someone can overcome the challenges that life throws at them, then they can do anything.

Joe Mussomeli is an upcoming 10th-grade student who lives in Westport, CT. His younger brother, Alex, has been featured in Hearing Health magazine and is a participant in HHF’s “Faces of Hearing Loss” campaign.

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Hearing Loss Film “Hearing Hope” Captures Personal Strength, Scientific Vision

Hearing Health Foundation (HHF) has created a new short film, “Hearing Hope,” to expand awareness of hearing health through the voices of those who benefit from and those who carry out the foundation’s life-changing work.

"It took me longer to talk than most kids. Because I couldn't understand what they were saying so I couldn't copy it," explains Emmy, 7.

The third most prevalent chronic physical condition in the U.S., hearing loss can affect anyone—from first-grader Emmy to retired U.S. Army Colonel John—but its reach is often underestimated. “It’s one of the most common sensory deficits in humans,” explains cochlear implant surgeon Dr. Anil Lalwani. “I think we have to go from it being hidden to being visible.”

Both a hearing aid user and cochlear implant recipient, seventh-grader Alex is doing his part to make hearing loss less hidden. Smiling, he says he wants people to know that hearing with his devices makes him happy. John wishes to be an advocate for veterans and all who live with hearing loss and tinnitus.

When she received her hearing loss diagnosis at 17, NASA engineer Renee never thought she'd be living her dream.

The film also highlights resilience in response to the challenges associated with hearing conditions. Video participant Renee saw her dream of becoming an astronaut halted at 17 when her hearing loss was detected. Now she helps send people to space as an engineer at NASA.

Sophia describes the “low, low rock bottom” she hit when she was diagnosed with Usher Syndrome, the leading cause of deafblindness. Yet she feels special knowing her disability shapes her and sets her apart.

Jason recounts having no resources for hearing loss in children when his son, Ethan, failed his newborn hearing screening. Today he’s grateful for Ethan’s aptitude for language, made possible through his early hearing loss intervention.

With the support of HHF, more progress is made each year. “I’m glad that the doctors are trying to figure out how fish and birds can restore their hearing,” says Emmy.

For the past 60 years, HHF has funded promising hearing science and in 2011 established the Hearing Restoration Project (HRP), an international consortium dedicated to finding biological cures for hearing loss using fish, bird, and mouse models to replicate the phenomenon of hearing loss reversal in humans.

“If [the HRP] can achieve that goal of hearing restoration...that would be a marvelous thing for hearing loss,” reiterates Dr. Robert Dobie.

Through “Hearing Hope,” HHF would like to share its mission and message of hope to as many individuals as possible and reassure those with hearing loss and their loved ones they are not alone. As an organization that channels all efforts into research and education, HHF would greatly appreciate any assistance or suggestions to increase visibility of the film.

Watch the full film at www.hhf.org/video. Closed captioning is available.

Advancing Accessibility in the Audiology Profession

By Lauren McGrath

Born with a profound sensorineural hearing loss, Jessica Hoffman, Au.D., CCC-A, never believed she could become an audiologist. In fact, she didn’t consider the profession until her final year as a biopsychology undergraduate at Tufts University.

By then, Dr. Hoffman was the recipient of successful hearing loss intervention and treatment for two decades. Diagnosed at 13 months, she was fitted with hearing aids by age two, practiced speech and hearing at the New York League for the Hard of Hearing (today the Center for Hearing and Communication) until five, and learned American Sign Language (ASL) at 10. She pursued a mainstream education since preschool with daily visits from a teacher of the deaf. Dr. Hoffman received cochlear implants at ages 14 and 24, respectively and, in college and graduate school, enjoyed a variety of classroom accommodations including ASL interpreters, CART, C-Print, notetakers, and FM systems.

After Tufts, Dr. Hoffman worked as a lab technician at Massachusetts Eye and Ear as her interests in studying hearing began to grow. But she doubted her abilities to perform key tasks in audiology, like speech perception tests and listening checks with patients. After speaking with others in the field with hearing loss, she became less apprehensive. Engaging with mentors like Samuel Atcherson, Ph.D., and Suzanne Yoder, Au.D., who have greatly advanced opportunities for individuals with hearing loss in audiology, further cemented Dr. Hoffman’s self-confidence. In 2010, she completed her Doctor of Audiology from Northwestern University.

Today, Dr. Hoffman is happy to work with both children and adults at the ENT Faculty Practice/Westchester Cochlear Implant Program in Hawthorne, NY. She takes pride in helping her patients realize that they are not alone with hearing loss and that technology, like her own cochlear implants, can provide immense benefits to communication. Dr. Hoffman is motivated to help her patients understand that hearing loss does not define who one is and can be viewed as a gain rather than as a limitation.

Dr. Hoffman’s career is not exempt from challenges. Fortunate to receive accommodations as a child and young adult, she is disappointed by the tools that are missing in a field that serves those with hearing loss. Though she credits her own workplace as being very understanding, Dr. Hoffman points out the difficulties she experiences during team meetings and conversations with patients who speak English as a second language. She is grateful to have considerate colleagues who will repeat themselves as needed or offer to facilitate verbal communication with non-native English-speaking patients.

At audiology conferences, however, necessities like CART, FM systems, and/or interpreters are often lacking for professionals with hearing loss. Dr. Hoffman and others with hearing loss in the audiology field have petitioned to encourage accessibility at such events. She has had to take on the responsibility of finding CART vendors for conference organizers to ensure her own optimal listening experience. She reports being brushed off by meeting leaders and a sense of doubt in her abilities and those of her colleagues with hearing loss.

Dr. Hoffman also wishes to see greater accessibility in audiology offices nationwide, including recorded speech perception materials, captioning for videos or TV shows in the waiting room, and email exchanges with patients, rather than phone calls. She’d like all audiology staff to be well-versed in communicating with people with hearing loss and to have a strong understanding of the Americans with Disabilities Act (ADA) as it pertains to hearing loss. Dr. Hoffman also thinks facilities would benefit from hiring ASL interpreters or Cued Speech transliterators as needed. Her ideas would help professionals like her and patients alike.

Accommodations for people with hearing loss and other disabilities in academics, public sectors, and the workforce—audiology included—should be provided without question, says Dr. Hoffman, who has had the burden of reversing many people’s misconceptions about her capability to thrive independently in her career. “The self-advocacy never ends, but it has made me stronger and more confident in my own abilities as a deaf person. I am proud to have a hearing loss because it has shaped me into the person I am today.”

Receive updates on life-changing hearing research and resources by subscribing to HHF's free quarterly magazine and e-newsletter.

One Person’s Lifelong Experience with Hearing Loss

By Dr. Bruce L. Douglas

I am a 93-year-old healthy adult with hearing loss. Many parts of my body don’t work perfectly right anymore, but my hearing loss is my biggest physical difficulty.

When it comes to hearing loss, I’ve been there and done that. Despite the fact that I am legally deaf, I can hear. Why? Because I’ve stubbornly fought back every time a hearing pitfall appeared in my path.

The reason I can hear is because I refuse to give into my disability. I try out every kind of useful assistive hearing device I can lay my hands on or is given to me by my Department of Veterans Affairs (VA) audiologist. I’ve become a hearing loss activist and fight for coiling of public facilities whenever I have the chance to do so. And I recently had a cochlear implant installed about a year ago.

As a boy, I remember always taking a seat at the front of the room, when most other kids would vie for one in the back, so they could cheat on exams without being seen by the teacher. I didn’t realize how poor my hearing was until I was reprimanded for inconspicuously (I thought) using a nail clipper under my desk in my elementary school classroom. I had no idea because I couldn’t hear it!

I tried to come to terms with my hearing loss for many years. I refused to hide in corners of rooms and restaurants, and dealt with my problem largely by disclosing my hearing loss to people and asking for their cooperation in our verbal relationships. My early hearing aids only allowed me to hear sounds but not comprehend them, so I learned to lip read and stare at my companions, often to the point of distraction.  

I have presbycusis, I’m suffering from acoustic trauma from my time in the Korean War, I have sensorineural deprivation, and I’ve experienced every imaginable kind of sound and sensation in the form of tinnitus.

Call us what you will, but don’t ignore us; don’t make fun of us. Most importantly, respect us; and treat us as equals. Be patient with us and accept the reality that we have an invisible condition that wove its way into our nervous system, most often beyond our control, and we do all we can to listen to you and respond to the best of our ability.

Dr. Bruce Douglas is a Professor of Health and Aging at the University of Illinois at Chicago School of Public Health. He is a participant in HHF’s Faces of Hearing Loss campaign.

Receive updates on life-changing hearing research and resources by subscribing to HHF's free quarterly magazine and e-newsletter.

Intern Awareness: Reflections from HHF

By Vicky Chan, Lauren McGrath, and C. Adrean Mejia

This spring, Hearing Health Foundation (HHF) has been fortunate to welcome two outstanding, dedicated young professionals to its office: Vicky Chan, Copywriting Intern and C. Adrean Mejia, Social Media and Digital Communications Intern. In honor of Intern Awareness Month, celebrated each April, Vicky and Adrean reflected on their experiences as members of the small yet mighty HHF team under the supervision of Lauren McGrath, Marketing Manager.

Vicky, a recent graduate from Brooklyn College with a Bachelor’s Degree in English, believes that interning at HHF has equipped her with invaluable, real-world experience to grow as both a professional and an individual. So far, Vicky has utilized her skills by editing, researching, and conducting interviews for HHF’s blog and magazine. A former writing tutor, Vicky acknowledges that writing for an official publication like Hearing Health magazine is markedly different than completing a college professor’s assignment. Unlike academic essays, Vicky’s articles at HHF must fit the voice of an established organization. And to effectively craft interview-style stories, Vicky has learned to put herself in the subject’s position to determine how they want their story to be portrayed.

Adrean Mejia (left) interned with HHF as a Social Media and Digital Communications Intern this semester. Vicky Chan is a current Copywriting Intern.

“Everyone at HHF has been open to my questions or suggestions to create an inviting learning environment,” Vicky notes. She’s pleased that HHF has given her purpose and the responsibility to produce written content about hearing health awareness. “Each time I complete an article or see my name on the byline, I feel a sense of satisfaction and pride because it shows that I am working towards my career goal—one step at a time.” Vicky plans to pursue a career in the book publishing field.

Adrean, who will soon complete his Bachelor’s Degree in Corporate Communications from Baruch College, recently ended his internship feeling inspired by HHF’s mission and enlightened by what he’s learned. Adrean, speaking honestly about the experience, admits, “At the beginning, adapting to the nonprofit sector and understanding the concepts related to hearing health were challenges for me.”

Fortunately, the role turned out to be enjoyable for Adrean thanks to the accommodating, communicative staff. He is grateful for the experience, which has opened up his eyes to new horizons and enabled him to contribute to an inspiring mission. Now ready to begin his postcollegiate career, Adrean’s long-term professional goal is to achieve a high position in the entertainment and beauty industry to showcase his vision as an artist.

HHF is grateful to Vicky, Adrean, and the dozens of other interns who have offered their time and talents to further hearing loss research and awareness. The foundation looks forward to meeting its Summer 2018 interns, who will pursue projects related to awareness, advocacy, video production, communications, digital media, fundraising, and donor management. To learn about Fall 2018 opportunities, contact us at careers@hhf.org or visit www.hhf.org/join-our-team in August.

Hearing Loss Lives with Me

By Sonya Daniel

I was born with bilateral sensorineural hearing loss. I didn’t know the official term for it until 2008. When I was a kid in elementary school I passed every hearing test that the mothers in the PTA administered. I was a pretty clever little girl. I learned that every test has a visible “tell” and knew how to guess “right” on all of them. I never wanted to fail any test. I learned to read lips, and assumed everyone heard that annoying ringing constantly. That, of course isn’t true.

The tinnitus became too overwhelming to deal with everyday. I hadn’t had my ears tested since I was little, so I didn’t know what to expect. It was much worse than I had ever imagined it would be. And now it had a name. I left the audiologist knowing at some point I’d be completely deaf. But, no one knows when that might be. I was a mother to three young boys. I wondered how much longer I’d hear, “Mommy, I love you.” Or If they’d hold out long enough to hear their grown-up man voices. How much longer until I couldn’t hear music?

Music is my passion. In fact, it’s my chosen profession. I never remember wanting to do anything but be a musician in some capacity. My dad played the guitar. My mother said when I was little I would sit in front of him and touch his guitar and I would stand in front of the stereo and touch the speakers. I suppose I was trying to “hear” the music. I knew I’d go to college and major in music as a vocalist. I knew I wanted to share my love for music and teach others.

College was a very difficult and stressful time. There was a course called “Sight Singing and Ear Training” required to complete my Bachelor’s in Music. I mean, come on! Ear training? I struggled. Professors struggled to teach me. Some never gave up because it was apparent I wasn’t going anywhere.

I did get to teach music to every level. I can’t do that anymore, but I still do music everyday. Sometimes in life you have to know that there are things that your body just won’t let you do. I’d like to be a 6’0” tall, blonde supermodel, too. My body said “no” to that and I think I’m ok.      
Living with tinnitus and hearing loss can be overwhelming and difficult. I’m not as afraid of living this way as I used to be. Everyone has a thing. This is just mine. I like to say I don’t live with hearing loss; it lives with me.

My journey has brought me to the cochlear implant. I’m a candidate in the preliminary stages of that process. Technology changes so fast it’s hard to keep up. My current devices have stronger receiver tubes and ear molds.

That’s just my journey with my ears. My life isn’t defined by or consumed with my ears, although it’s felt that way at times. I’m constantly learning and growing. I’m getting stronger with each high and low I face. But, isn’t that just life?

Sonya Daniel is a musician/teacher, writer, and voiceover artist. She is a participant in HHF’s “Faces of Hearing Loss” campaign.

Receive updates on life-changing hearing research and resources by subscribing to HHF's free quarterly magazine and e-newsletter.

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.