Miracle Moments

By Casey Dandrea

Virginia toddler Charlotte (Charly)’s first experiences with sound using hearing aids captivated millions. The video, taken in 2017 when Charly was an infant, aired across multiple local television networks and went viral on the internet.

Photo credit: Christy Keane (@theblushingbluebird)

Charly’s mother, Christy Keane, is heard fighting back tears in response to her daughter’s expressions. “I’ve never seen that face before. You’re going to make me cry,” Christy says as Charly displays a smile and her eyes light up. For the first time, Charly was visibly reacting to Christy’s voice.

Charly’s one-minute viral video debut was more than heartwarming—it was educational. With technology, children born with hearing loss can communicate just like those with typical hearing.

Christy’s understanding of profound hearing loss before Charly’s diagnosis was minimal. “I had never met a deaf person in my life and had absolutely no knowledge on hearing loss or intervention options,” Christy says. Following Charly’s birth, Christy immediately surrounded herself and family with a team of supportive specialists to earn more about pediatric hearing loss and options for treatment.

Charly was diagnosed with a bilateral profound sensorineural hearing loss at age 1 month after failing all three hearing tests as a newborn. She was fitted with hearing aids at 2 months old, which she wore for eight months prior to her cochlear implant (CI) surgery in June 2018. Christy and her husband chose cochlear implantation for their daughter because they wanted to give Charly the best access to speech and sound for her needs.

Christy and Charly. Photo credit: Christy Keane (@theblushingbluebird)

Having had access to sound since infancy, Charly will enjoy the same opportunities as a child with typical hearing. Children who receive early intervention for hearing loss reduce their risk of falling behind in speech and language acquisition, academic achievement, and social and emotional development.

The video’s reception inspired Christy to chronicle her daughter’s progress on Instagram. Now with one hundred thousand followers, Christy is thankful to have touched so many individuals all over the world. Her #miraclemomentsoftheday posts, in which she records Charly’s reactions to her daily CI activation (and previously her hearing aids), are especially popular.

Christy is proud to have created a forum that provides encouragement to families of children with hearing loss. “Every day I receive a message from a parent of a newly diagnosed child and I can remember the exact emotions they are experiencing,” she says “I love to be an example of how fulfilling it is to be a parent-advocate and how quickly your perspective changes as you learn more about hearing loss and language options.”

Christy hopes to change perceptions of hearing loss offline, too. She volunteers with Virginia Hands & Voices, an organization that helps families of children with hearing loss. Ultimately, Christy is working to provide an atmosphere for families with children with hearing loss to come together to celebrate their achievements and share their experiences.

Casey Dandrea is an HHF intern studying journalism at Long Island University Brooklyn. For more on Charly’s progress, see Christy’s Instagram.

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.

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.

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.

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.

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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.

The Best Lesson Yet

By Layla Rudy

I was diagnosed with bilateral sensorineural hearing loss at age 3, after a series of unsuccessful doctor visits. Two years later, I was going to the audiologist to get my hearing aids for the first time. I remember being frightened by a picture in the waiting room of the shiny tube that comes out of the ear molds attached to hearing aids. My little brother was crying in the stroller as we left the doctor’s office for brunch.

Layla, age 5, with one of her brothers, James

I went to speech therapy for the next four or five years; during school, along with two other kids, I was pulled out of class a few times a week. I remember thinking that I didn’t belong there, that I was “normal,” and that everything was fine with me. But the teachers and administration didn’t know what to do with me—they thought something was wrong with me, and they just threw me in the same boat as the kids with speech problems or ADHD.

I was the only kid in my elementary school with hearing loss. While it was great that my mom wanted to mainstream me, looking back, it was clear the school didn’t know how to handle a student like me.

The problem was ignorance more than a lack of resources—although that was an issue, as well. My teachers plopped me in a desk—not always in the front of the room—and, not understanding how important the FM system was for me to hear in their classrooms, didn’t wear it. I thought the teachers didn’t care about me, but it turns out they just never learned how to deal with students with hearing loss. I was too embarrassed to say anything, so the FM systems often went completely unused. For the same reasons, I was never assigned a note-taker. I was the outlier in a room full of typical children.

Identical issues continued in middle school and high school. I developed anxiety from a young age and, by adolescence, the effects were more severe. In retrospect, a lot of my anxiety stemmed from my worries that my peers were talking about me, or that I was not fully aware of my surroundings. To put it simply, I was anxious because I couldn’t hear.

My mom had always told me that college would be easier—I could get a note-taker and finally have the resources I never had. When I applied to Brooklyn College, I found the Center for Student Disabilities Services on their website. I was thrilled to find that they had a section devoted to hearing loss and deafness. Better yet, professors were given a guide to understand how each disability was to be handled and treated.

So, when I arrived at their offices, I filled out forms and submitted my hearing test results. They had told me to come back in a few days, at which point I would have everything I had wished for in elementary school.

Ironically, I never bothered to go back to their offices, and I never bothered with their accommodations.

I have spent my whole life going home and teaching myself what the teacher had taught us in class (that I could not hear)—taking my own meticulous notes that my classmates begged to borrow. I have always wanted a note-taker, an FM system that gets consistently used, and empathetic teachers. Now that I finally have access to all of this, I don’t need it.

I realize I’ve subconsciously trained myself not to rely on anyone else; it’s not that I don’t want to ask for help, or that I’m too embarrassed. I know that if I need it, I can ask, unlike when I was in elementary school. But my hearing loss, my disability, has enabled me to rely on myself, to be aware of my surroundings, to better communicate with others.

And to me, self-reliance is the best lesson yet.

New Jersey native Layla Rudy is a freshman at Brooklyn College planning on studying biology to eventually conduct auditory research. She is also a participant in HHF’s “Faces of Hearing Loss” campaign.

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Preparing Deaf & HoH Athletes: Assistive Technology & Your Rights

Lexi, a nine-year-old athlete with hearing loss, prepares to bat. Her helmet hides the processors she wears over her ears. Photo by Gina Bailey.

By Jaime Vernon

I knew it would come: the day my daughter, Lexi, faced discrimination in sports related to her hearing loss. A helicopter parent questioned Lexi’s use of a device that allows her to hear on the field—a mask for her real outrage over her child’s strikeout. Awful sounding, right? But it happened to Lexi.

I authored this piece as a blueprint for everyone with hearing loss and deafness. I believe everyone with hearing loss and their family members should know their rights and what to do when something like this happens. And, as always, I want to share the needs and rights of individuals who wear cochlear implants or hearing aids with typical-hearing people.

Lexi Vernon, my nine-year-old daughter, is truly a force to be reckoned with. I'm not saying she's perfect. She is tough to coach. She experiences mental fatigue that sometimes makes her appear "spaced out.” Many times, she can’t hear you during softball practice due to distance or loud noises. She is headstrong and stubborn. However, Lexi is a raw, talented athlete and a fierce competitor. She's strong, tall, and determined. She is a talented basketball player and, more pertinent to her story, a fast pitch softball player.

The coolest part about Lexi's story is that she is 100% deaf. Lexi is a bilateral cochlear implant recipient. She had a surgery in both of her ears in which they implanted a cochlear implant into her cochlea which is located in her inner ear. That implant is also attached to her hearing nerve which sends signals to her brain. Lexi wears processors on the outside of her head (just over her ears) which are the microphones and small computers that send the sound (signals) into the implant. See how a cochlear implant works here.

During athletic games, Lexi needs a small device called a "mini-mic" which is an amplifier for the coach's voice. When she is wearing additional equipment, which can cover her microphones on her processors, or when distance is an issue; this mini-mic allows Lexi to hear her coach better. It’s still not perfect, but it really helps. Learn about a mini-mic device.

This weekend, I had to witness some awful behavior by parents of young athletes. I also had to witness umpires handling it all wrong.

Our team, the Tennessee Bash, of which I’m one of the coaches, was playing in a World Series in Tennessee. We were one of the “teams to beat.” Lexi is a pitcher on the team. During the final game to determine or placement in the Winner’s Bracket, not only did our opponent question Lexi’s assistive technology, but so did the umpires.

I have no problem if anyone asks about her equipment—and I usually disclose it. This tournament, however, only allowed one coach out at pregame, so I didn’t have an opportunity to do so.

The fans started yelling and acting foolishly, thinking I was feeding Lexi information into some mic when they noticed her device. To be honest, I don't even call the pitches. That coach does not wear the mini-mic. She takes the sign from her catcher like everyone else. Then our first base coach uses it when she's up to bat.

The umpire soon raised the questions to our first base coach. Their conversation went like this:

Umpire: “So, is she hearing impaired?”

Coach: “Yes. She is deaf. She was implanted with cochlear implants in both her ears and this mic helps her hear me with all the equipment.”

At that point, it should have been done. Finished. End of conversation.

But no. The umpire wasn’t satisfied. “Can’t she use signs?” she insisted.

Stop. Wait a minute. That is more offensive to us than anything. We fight every day to mainstream Lexi in a spoken language world. Lexi went through five years of intense speech therapy, a special “oral deaf rehab” school and speech tutoring at home three nights a week. She worked hard to be able to hear and speak.

The opposing fans went on about it. Then, an umpire not officiating the game, sitting under a tent, started questioning it. And we’re in the middle of the game! Our coach was trying to coach! Lexi wasn’t even up to bat; she was in the dugout!

Thankfully, Lexi couldn’t hear any of what was going on and Coach Charles took the mini-mic away from his mouth. How would Lexi have felt if she knew half of the people at that game were going on and on about how she shouldn’t be able to use equipment to help her hear?

So, after all the hullabaloo, I went out and spoke to the umpire directly. She seemed satisfied with my explanation. However, the fans didn’t let up. My co-coach handled it sublimely.

So here’s the truth. If our circumstances permit something that stretches our emotions or mind or will, we are supposed to use it. I’m going to use this situation as an example of how to be equipped for this in the future.

Let’s say someone was on the softball team with a prosthetic leg. Do you think anyone would ever be upset that they were playing with their leg on? No, because any human being would be touched by this person’s courage to participate in mainstream athletics!

Simply because you cannot see someone’s hearing loss or deafness doesn’t mean it isn’t something very real and very difficult to overcome. That’s Lexi—and hundreds of thousands just like her. They overcome deafness every single day due to amazing technology, but it isn’t human, natural hearing. They do, at times, require special needs.

Resources

• Laws, Rules, and Regulations: These laws state that people with hearing loss and deafness have the right to an “even playing field” figuratively and literally speaking.

• How to Manage the Use of Assistive Technology in Athletics

Whatever you do, prepare yourself or your child for this possible scenario. Remind them that people can be ugly many times and to simply ignore it. Remind them that there are also incredible human beings in this world that fight for these laws to exist, so let’s focus on the fact that they can hear, use spoken language and play sports like every hearing person!

Jaime Vernon is the Founder and CEO of Songs for Sound, a nonprofit organization focused on hearing healthcare and inclusion opportunities for those with hearing loss. This story was republished with her permission. For more on her daughter Lexi Vernon’s cochlear implant story, visit Songs for Sound’s Mission & History page.