Hearing Loss & Tinnitus

Breaking The Silence

By Joe Mussomeli

If there's one thing my brother, Alex, and I love, it’s spending time with our cousins in Maryland. We’ve been visiting them for years now—each stay more fun than the last.

These visits have left us all with happy memories of holding Mario Bros. competitions on the Wii, playing tag downstairs, watching funny movies, and, most importantly, telling stories before bed. When we were little, we used to tell stories to each other all the time. Together we’d create ridiculous parodies of fairy tales taking place in obscure settings, including our own versions of Jack and the Beanstalk and The Jungle Book. We loved telling these stories.

One time, we finished telling our stories and readied ourselves for bed. As usual, my brother Alex took his hearing aid and cochlear implant off in preparation for sleep. After this, our cousin Lara, who was only five years old at the time, asked Alex a question. When he didn’t reply, she repeated her question. To her confusion, he didn’t say anything once more. Lara then called for my mom and asked why Alex wasn’t answering. My mom explained to Lara that when Alex takes off his hearing aid and implant, he cannot hear anything.

“He can’t hear anything?” Lara asked.

“He can’t hear anything,” my mom confirmed.

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Lara was silent for a few seconds before she said something; “You know, it’s challenging, but maybe it’s peaceful at times, not hearing a sound. Maybe it’s relaxing for him.”

Though our visits to Maryland are enjoyable, Alex’s hearing loss has presented challenges for our family when we go swimming with our cousins. When Alex was little, he was unable to wear his hearing devices while swimming, for they were not waterproof. This meant that he could not converse with our cousins in the pool; he couldn’t join in on the conversation in a meaningful way. He could talk, but he couldn’t respond. He could swim with them in the pool, splash water in their eyes, and laugh along with them. He just couldn’t hear his own laughter.

We all worried that Alex would get hurt while swimming without his hearing technology.  My cousins and I tried our best to help Alex when we were in the pool. We would always swim near him, making sure he was safe. I, in particular, would answer questions anyone was trying to ask Alex when he was in the water. I hope I did my best to help him out during these early years.

All of this changed when something marvelous entered our lives, a waterproof cover for his cochlear implant that makes it usable for swimming. This has made swimming so much better for Alex. He can now hear in the pool and can socialize with others. He can talk with our cousins, splash them with water, and hear his own laughter. Now, whenever someone asks him for his name, he can confidently say, “I’m Alex, what’s your name?”

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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A Fast Track to Hearing Damage

By Andrew J. Guralnick

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Millions of commuters using the New York City subway system know it can be noisy, but just how loud is it? As a 2018 Hearing Health Foundation (HHF) intern, I set out to measure the danger that the NYC Metropolitan Transit Authority (MTA) subway system presents to riders and employees.

I found that the system significantly breaches the threshold of what is safe for our ears. To protect hearing, both the U.S. Environmental Protection Agency and the World Health Organization recommend an average exposure limit of 70 decibels (dB) over the course of 24 hours. But what we measured exceeds that limit: Our samples show the average noise levels on all subway platforms and on all subway rides (inside subway trains) is between 72.5 and 76.5 dB and between 74.1 and 75.8 dB, respectively. And, with maximum readings actually as high as 119 dB on platforms and 120 dB on rides—based on actual recorded data within the sample—the NYC subway is likely an auditory minefield. (See hhf.org/subway for full data.)

Using our data’s sample averages, I determined ranges as to what the actual averages are on all subway platforms and rides through the MTA system. Based on the data, we are 99 confident about our results.

Collecting and Analyzing

From January to August 2018, three data collectors used Decibel Meter Pro, a smartphone app on iPhones and an iPad to collect 120 samples from platforms and rides. All 60 platform samples were equally represented at five minutes each. The 60 ride samples were assigned random recording lengths from 10 to 30 minutes. Samples on Saturday and Sunday or between 11 p.m. and 4:45 a.m. on any day were excluded. Random sampling was utilized as much as possible to help ensure generalizability on behalf of all platforms and rides.

The analysis examined potential harm to hearing from loud noises on subway platforms and loud noises during subway rides. For platform noise, the main variable is the number of trains that pass; for subway ride noise, the main variable is the number of local stations the train passes. We also investigated the number of seconds the subway noise level reached 75 dB or higher.

When measuring subway rides, we noted train travels between Manhattan and another borough or vice versa; whether a train runs above ground; whether the sample was collected during rush hour; and whether a local train ever becomes an express train, with fewer stops.

The statistical method of multiple regression was used to predict dangerous noise exposure on both platforms and rides. We can predict that each train that enters or leaves a platform will expose a rider’s ears to 16.53 seconds of noise at 75 dB or higher. For example, if a rider waits at a platform where two trains come and go before their train arrives, that would be a predicted exposure of 82.65 additional seconds of noise at 75 dB or higher.

We can also predict that each subway stop that is passed will expose a rider’s ears to 36.06 seconds of noise of 75 dB or higher. For example, if a rider passes 10 local train stops on their trip, the predicted exposure of noise at 75 dB or higher is 360.60 additional seconds—or 6.01 additional minutes.

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Cumulative Effect

HHF’s recommendation for commuters, MTA staff, and platform retailers such as newsstand operators is simple: Wear ear protection. MTA staff and platform retailers are at elevated risk given the hours they spend underground and on the trains. The tendency for many commuters to block noise by raising the volume of their headphones is not a helpful approach and could in fact damage hearing even more.

The subway is merely only one of many sources of daily noise. “Noise-induced hearing loss can result from a single, sudden noise event and from constant exposure to loud noises that has a cumulative effect (not unlike sun exposure) and can lead to related negative health effects when unknown and untreated,” says Lauren McGrath, HHF’s marketing manager.

The MTA appears aware of the issue of subway noise. The newly built Second Avenue subway line uses effective noise-reduction measures such as “low vibration tracks and sound absorbing panels.” We hope the MTA will continue to use these quieter, low vibration tracks when making subway and station upgrades, especially since they are more cost-effective than traditional wooden tracks.

2018 HHF intern Andrew J. Guralnick is pursuing a master’s in public administration at Baruch College in New York City.

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

 
 
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Painting for a Cure

By Nicolle Cure

My art is the fuel that ignites my passion for helping others. I use my art as a tool to create so that I can support the causes I believe in. Throughout my life, I have created several collections, for the most part biographical. To date, I've been blessed to have the opportunity to collaborate with animal welfare campaigns as well as education and health research initiatives. I am now proudly raising awareness about a particular cause that is dearest to my heart—hearing loss and vestibular (balance-related) disorders—after experiencing these conditions myself.

  Nicolle painting in her studio. Credit: Lia Selfridge

Nicolle painting in her studio. Credit: Lia Selfridge

On August 4, 2017, I woke up and noticed that the right side of my head was numb. I felt a strong pressure in my right ear and couldn’t hear anything as my ear felt blocked and full. It was really scary and very sudden.

Since that day, I have been in and out the hospital trying to decipher what is wrong with me and how to cure it. My first audiology appointment showed a profound hearing loss in my right ear, and after steroids injected into the middle ear for two months, I was able to recover the ability to hear low frequencies. However, the high frequencies only improved to severe (from profound), which is why I now suffer from tinnitus and I am extremely sensitive to environmental sounds.

My hearing loss was only the beginning. During the initial months, I also suffered from BPPV (benign paroxysmal positional vertigo), debilitating vertigo episodes, chronic migraines, constant nausea, and dizziness. My balance was completely off and I swayed to the right when walking. It felt like I was walking on quicksand. Another symptom that persisted for months was chronic fatigue, to the point that I could not get out of bed on certain days. My body felt heavy as if I had a slab of concrete on top of me.

These “invisible conditions” can really affect patients an emotional level. I was completely isolated from the world, I didn’t want to see anyone, and I avoided phone calls and going out. I’ve always been a very independent person and the fact that I couldn’t do anything or go anywhere made me feel frustrated most of the time.

My boyfriend Felipe, a communications professional and music producer, has been the greatest companion, helping me thrive and heal with his patience and love, and for that I am truly grateful. We share a passion for music and going to concerts, but from the time of my hearing loss I avoid loud places and crowds in general. I know music to him means as much as art to me, so I now wear custom musician’s earplugs. I am also investigating a hearing aid for my right ear, which my audiologist recommended after a recent tinnitus assessment to manage my tinnitus and sound sensitivity. Vestibular rehab therapy helped me regain my balance, as I had difficulty walking or even just standing still.

And of course my art has been my most powerful coping mechanism. While I am in the process of creating, I can focus better and forget about my symptoms. Painting makes me ignore my tinnitus even for a short period of time.

This experience has given me the opportunity to create awareness about invisible conditions. It is a fuel that continues to ignite my passion for the arts and for helping others. It has given me a sense of purpose—I truly feel the need to wake up and create something beautiful to deliver a powerful message of positivism in spite of my symptoms.

In “The Colors of Sound” painting collection, I am trying to capture emotions and moods in sound. Using his recording equipment, Felipe showed me the range of frequencies that I was not able to hear anymore. It was a bizarre experience to be able to see the sound waves and frequencies that I could no longer hear. These ink paintings replicate the energy and movement of what was now missing.

Behind every invisible illness there are wonderful individuals with the will to thrive and heal. Helping others has been incredibly therapeutic for me, and I gained so much support from people, too. I want to create a space for dialogue so people can be open about their conditions and find treatments and relief and know that they are not alone in this journey.

Nicolle Cure is an artist based in Miami. “The Colors of Sound” appeared at Art Basel in Miami Beach (December 2017–February 2018).

A better quality of life for Nicolle—and so many others—is dependent on research funding for HHF’s groundbreaking scientific programs.

Please, if you are able, make a contribution to the research that will someday make it possible for Nicolle and millions of others to reclaim their independence.

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The Miracle of the Cochlear Implant

By Barbara Sinclair

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

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.

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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

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Noise: Exposed

By Nadine Dehgan

Aboard my noisy flight to the Hearing Loss Association of America (HLAA) Convention in June, I couldn’t help but reflect upon loud sounds—and what can be done to reduce our exposure.

I’d recently learned that the word “noise” is derived from “sea sickness” or “nausea” in Latin. Noise has literally been associated with poor health outcomes for thousands of years.

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Synonyms for “loud” include “ear-splitting” and “deafening.” In fact, vibrations from loud noises travel through the eardrum to reach our inner ear, where sensory hair cells change them into electrical signals to be interpreted by the brain. Hair cells, however,  come in limited supply. Humans are typically born with 16,000—and when these cells are damaged by noise, age, ototoxic drugs, or other factors, the brain’s ability to communicate with the ears is significantly weakened, resulting in permanent hearing loss.

Concerned about my fellow plane passengers’ hair cells, I opened my phone’s decibel (dB) measuring app, which indicated the maximum noise level after takeoff was 92 dB, while the average was 83 dB. The app also pointed out that this dB level is equivalent to that of alarm clocks. While this doesn’t seem uncomfortable, it’s actually not recommended for periods over two hours. I’d come prepared with both earplugs and noise-canceling headphones—which I limit to 60 percent of maximum volume in accordance with the World Health Organization (WHO)’s recommendation. But not everyone taking flights comes prepared for the dangerous levels of noise inside the plane.

The National Institutes of Health (NIH) states noise greater than 75 dB can harm hearing, and in 1974, the Environmental Protection Agency (EPA) recommended that sound exposure should remain at or below 70 dB to prevent noise-induced hearing loss. Sudden loud noise—such as from blasts, gunfire, firecrackers, and bullhorns—also can cause hearing loss with levels reaching 165 dB! This is why so many veterans return with hearing loss and tinnitus. Tragically, they are the two most common disabilities for those who serve.

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And yet our society glorifies noise. Two confessions explain my frustration. The first is I love to listen to love songs from the ’90s and my children think these songs are current hits. My second is when my kids are not in my car I often listen to classical music, but once in awhile I listen to current hits. One station’s tagline actually is “Ear-Popping Music.” I couldn’t believe that damaging eardrums was being advertised as a good thing! My youngest daughter, Emmy, had many eardrum ruptures—from infections, not noise—and she truly suffered. My anguish as a parent watching my baby and then toddler in pain was nothing compared to the pain she endured with no understanding of why.

How can we be okay with hearing loss and ear damage advertised as a positive experience? No one would advertise skin cancer from excessive sun exposure as a perk of a beach vacation. Nor would a beverage manufacturer tout soda’s negative impact on dental health.   

It is my wish that one day we take the real risk of hearing loss seriously and recognize it for the epidemic that it is. Experts say approximately one in five American children will have permanent hearing loss (largely noise-induced) before reaching adulthood. University of Ohio scientists report that even mild hearing losses in children can cause cognitive damage that would typically not occur until at least age 50. This is horrifying.

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Still, we surround our children with damaging noise. Birthday parties, movie theaters, weddings, and family celebrations can blast noise exceeding 115 dB. Football stadiums, hockey arenas, exercise classes, and music concerts have clocked in at over 140 dB, which can cause irreversible hearing loss—whether sudden or progressive damage—in minutes.

Recently, a friend told me she complained of high noise levels (105 dB) to her daughter’s dance studio. Instead of offering to turn down the volume, management told her that she could leave the class. While her daughter can no longer attend dance class, my friend has the consolation of knowing her child is safer. My thoughts go to the employees of fitness centers, stadiums, restaurants, bars, and other commercial establishments whose ears are constantly assaulted.

Before becoming CEO of Hearing Health Foundation (HHF), I didn’t appreciate the dangers and consequences of loud sound. I now know that even a mild untreated hearing loss can lead to social issues including isolation, depression, and poor academic performance in children. In adults, the stakes are also high, with untreated hearing loss bringing the risks of mental decline, falls, and premature death.

Hearing loss can be mitigated by technology including hearing aids and cochlear implants. While these treatments are beneficial and life-saving, HHF is funding research toward permanent cures. Birds, fish, and reptiles are all able to restore their inner ear hair cells once damaged—but mammals including humans cannot. HHF funds a consortium of top hearing scientists through our Hearing Restoration Project (HRP) who study how other species are able to regenerate their hearing in order to apply this knowledge to humans through a biological cure.

As the plane descended toward Minneapolis, my ears popped, but I know the minor discomfort can’t compete with what Emmy experiences. As the mother, sister, daughter, and granddaughter of individuals with hearing loss, I remember my two biggest wishes: for society to place a greater value on hearing protection, and for HHF to continue to support researchers on their quest to treat and cure hearing loss and related conditions.

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

 
 
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How Nutrition Affects Our Hearing

By Meagan Rowley

Nutrition is fundamental to health, but seldom does one learn about the relationship between diet and the auditory system. Nutrition and hearing ability are, in fact, connected.

There is no specific food that will definitely cause or prevent hearing loss. Likewise, lost hearing cannot be restored through a diet change. However, new research suggests that certain nutrition patterns may actually decrease—or increase—your risk of developing hearing loss.

A 22-Year Diet Study

A Brigham and Women’s Hospital study monitored the hearing health of more than 70,000 women on various diets for 22 years. These diets included the Alternate Mediterranean Diet (AMED), Dietary Approaches to Shop Hypertension (DASH), and Alternative Healthy Eating Index-2010 (AHEI-2010). These diets favor fruits, vegetables, seeds, nuts, legumes, whole grains, seafood, poultry, and low-fat dairy. All three also advise limiting foods that are high in sodium (salt) and LDL (low-density lipoprotein) cholesterol, discouraging consumption of refined and red meats, processed foods, and sugary drinks.

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Women following diets similar to the AHEI-2010, DASH, and AMED decreased their likelihoods of hearing loss by at least 30 percent, with DASH and AMED showing the greatest benefits. The researchers found that diets that prioritize fruits and vegetables with minerals like folic acid, potassium, and zinc decreased the risk of hearing loss.

Beneficial Nutrients

Other findings indicate that certain nutrients are associated with positive hearing health outcomes. Potassium—a mineral found in bananas, potatoes, and black beans—plays a large role in the way that the inner ear functions and converts sounds into signals for the brain to interpret. Regular intake can help you maintain your current level of hearing, says Sherif F. Tadros, M.D., of the International Center for Hearing and Speech Research in a Europe PubMed Central published study.

George E. Shambaugh, Jr., M.D., of the Shambaugh Hearing and Allergy Institute reports that the zinc in almonds, cashews, and dark chocolate can be an effective treatment for tinnitus, hearing ringing or buzzing without an external sound source. Magnesium is believed to combat free radicals emitted during loud noises and act as a barrier protecting inner ear hair cells.

Folic acid has also been shown to possibly slow the onset of hearing loss. Blood flow is restricted by homocysteine (an amino acid), so folic acid works to metabolize it to keep blow flow regulated. According to Jane Durga, Ph.D., of the Nestlé Research Center in Lausanne, Switzerland, because the inner ear relies on a regular flow of blood, folate is extremely important. Foods high in folic acid include spinach, broccoli, and asparagus.

Adverse Effects of Malnutrition

Conversely, malnutrition negatively affects the human body. In an examination of 2,193 participants ages 16 to 23, Susan D. Emmett, M.D., and colleagues found that malnutrition not only stunts anatomical development in children, but slows inner ear development. Malnourished children were observed as being twice as a likely to develop hearing loss as young adults compared to their well-nourished peers.

Further, the study acknowledges that that stunting often begins before birth. A malnourished woman who is pregnant or nursing is likely to pass on any deficiency she may have to her child. Hindered inner ear development in utero caused by malnutrition contributes to a higher risk of hearing loss than does malnutrition in vivo.

Diabetes Connection

Individuals with type II diabetes also are more likely to develop hearing loss than their nondiabetic counterparts, according to an National Institutes of Health-funded project by researcher Chika Horikawa, Ph.D., of Japan’s Niigata University. Subjects with prediabetes—those who have elevated blood sugar levels but not elevated enough for a diagnosis of diabetes—also have a 30 percent increased risk The study authors attribute the higher risk to damaged nerves and blood vessels of the inner ear, a consequence of having type II diabetes for an extended period of time.

Though rarely acknowledged, diet has a lot to do with the auditory system. Adding just a few foods to your daily diet and paying attention to the nutrients that your diet is missing may significantly impact hearing over the long term.

As an aspiring doctor currently studying nutrition during my undergraduate years, I understand how important it is to look at an individual's state of health from different angles and perspectives. Nutrition is vital to every aspect of health.

An HHF summer intern, Meagan Rowley is a senior on the pre-medicine track studying human nutrition at Case Western Reserve University in Cleveland.

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

 
 
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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.

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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.

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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.

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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  

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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.

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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.

"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.

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.

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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.

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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.”

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