Children

HHF Endorses California Pediatric Hearing Aids Bill

A young girl speaks at the podium during Assemblyman Bloom’s press conference to introduce his bill to require insurance companies to cover pediatric hearing aids. Credit: Richard Bloom

A young girl speaks at the podium during Assemblyman Bloom’s press conference to introduce his bill to require insurance companies to cover pediatric hearing aids. Credit: Richard Bloom

Hearing Health Foundation (HHF) has formally endorsed AB 598, a bill in California calling for the expansion of hearing aid insurance coverage for children.

California resident Elizabeth Keithley, Ph.D., Chair of HHF’s Board of Directors, recently wrote a letter of support to Assemblywoman Lorena Sanchez, who has stopped earlier versions of the bill. You can read her letter below.

If you live in California and would like to identify and contact your representative about AB 598, you may do so here.


Letter of Support from Elizabeth Keithley, Ph.D.

Dear Assemblywoman Lorena Gonzalez,

Thank you for the leadership you provide to San Diego. I write to you as the Chair of the Board of Hearing Health Foundation (HHF) and Professor Emerita of Surgery/Otolaryngology Head and Neck Surgery at the University of California, San Diego, School of Medicine. I am requesting your support for AB 598, introduced by Assemblyman Richard Bloom, which will require insurance coverage for children’s hearing aids in our state.

HHF is the nation’s largest nonprofit funder of hearing and balance research. Our scientists’ work has led to development of cochlear implants, innovative ear treatments, and progress toward biological cures for hearing loss. We work tirelessly to better the lives of the 50 million Americans with hearing loss.

Beyond research, HHF has been a longtime advocate for Universal Newborn Hearing Screenings, federally mandated in the 1990s. Identifying hearing loss at birth enables parents to promptly pursue intervention for their child. The first six months of a child’s life are the most critical in forming auditory pathways in the brain to hear.

The majority of individuals with sensorineural (permanent) hearing loss, including children, can benefit from hearing aids as treatment to communicate, learn, and develop healthily. A pair of pediatric hearing aids can burden a family by as much as $6000 per pair, which generally must be replaced every three to five years. This is an out-of-pocket expense of over $40,000 before a child reaches 21.

This immense financial barrier to treatment result in absence of treatment that then inhibits children’s social, speech and language development, and academic performance. For an individual child who does not receive intervention, the estimated cost of special education and loss of productivity is $1M.

Right now, California urgently needs the help of leaders like you to relieve families from the stress of choosing between hearing aids for their children and other health necessities. The strength of the future CA workforce depends on it.

Thank you for your consideration. I truly hope you will act to support California’s children through AB 598.

Sincerely,

Elizabeth M. Keithley, Ph.D.

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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   )

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   )

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.

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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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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.

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.

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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

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.

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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.

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

 
 
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Studying Difficulties in Sound Localization

HHF partner Clarke Schools for Hearing and Speech published briefings on three Emerging Research Grants (ERG) recipients’ projects that investigate Central Auditory Processing Disorder (CAPD).

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CAPD causes one to have trouble with sound localization, specifically in their ability to isolate a sound source in social environments. Individuals with CAPD also have difficulty decoding the meaning of language, even though they do not necessarily have a hearing loss. CAPD occurs when the part of the brain that translates what the ear delivers does not function properly.

The individual works of ERG recipients Elizabeth McCullagh, Ph.D., Andrew Dimitrijevic, Ph.D., and Yoojin Chung, Ph.D. are summarized in the Clarke news piece.

Combined, their research efforts and related studies will lead the way to possible CAPD medical intervention, including that for children and cochlear implant recipients.

Read full piece from Clarke Schools for Hearing and Speech here.

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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.

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

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.

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Early Detection Improved Vocabulary Scores in Kids with Hearing Loss

By Molly Walker

Children with hearing loss in both ears had improved vocabulary skills if they met all of the Early Hearing Detection and Intervention guidelines, a small cross-sectional study found.

Those children with bilateral hearing loss who met all three components of the Early Hearing Detection and Intervention guidelines (hearing screening by 1 month, diagnosis of hearing loss by 3 months and intervention by 6 months) had significantly higher vocabulary quotients, reported Christine Yoshinaga-Itano, PhD, of the University of Colorado Boulder, writing in Pediatrics.

The authors added that recent research reported better language outcomes for children born in areas of the country during years where universal newborn hearing screening programs were implemented, and that these children also experienced long-term benefits in reading ability. The authors said that studies in the U.S. also reported better language outcomes for children whose hearing loss was identified early, who received hearing aids earlier or who began intervention services earlier. But those studies were limited in geographic scope or contained outdated definitions of "early" hearing loss.

"To date, no studies have reported vocabulary or other language outcomes of children meeting all three components of the [Early Hearing Detection and Intervention] guidelines," they wrote.

Researchers examined a cohort of 448 children with bilateral prelingual hearing loss between 8 and 39 months of age (mean 25.3 months), who participated in the National Early Childhood Assessment Project -- a large multistate study. About 80% of children had no additional disabilities that interfered with their language capabilities, while over half of the children with additional disabilities reported cognitive impairment. Expressive vocabulary was measured with the MacArthur-Bates Communicative Development Inventories.

While meeting all three components of the Early Hearing Detection and Intervention guidelines was a primary variable, the authors identified five other independent predictor variables into the analysis:

  • Chronological age

  • Disability status

  • Mother's level of education

  • Degree of loss

  • Adult who is deaf/hard of hearing

They wrote that the overall model was significantly predictive, with the combination of the six factors explaining 41% of the variance in vocabulary outcomes. Higher vocabulary quotients were predicted by higher maternal levels of education, lesser degrees of hearing loss and the presence of a parent who was deaf/or hard of hearing, in addition to the absence of additional disabilities, the authors said. But even after controlling for these factors, meeting all three components of the Early Hearing Detection and Intervention guidelines had "a meaningful impact" on vocabulary outcomes.

The authors also said that mean vocabulary quotients decreased as a child's chronological age increased, and this gap was greater for older children. They argued that this complements previous findings, where children with hearing loss fail to acquire vocabulary at the pace of hearing children.

Overall, the mean vocabulary quotient was 74.4. For children without disabilities, the mean vocabulary quotient was 77.6, and for those with additional disabilities, it was 59.8.

Even those children without additional disabilities who met the guidelines had a mean vocabulary quotient of 82, which the authors noted was "considerably less" than the expected mean of 100. They added that 37% of this subgroup had vocabulary quotients below the 10th percentile (<75).

"Although this percentage is substantially better than for those who did not meet [Early Hearing Detection and Intervention] guidelines ... it points to the importance of identifying additional factors that may lead to improved vocabulary outcomes," they wrote.

Limitations to the study included that only expressive vocabulary was examined and the authors recommended that future studies consider additional language components. Other limitations included that disability status was determined by parent, with the potential for misclassification.

The authors said that the results of their study emphasize the importance of pediatricians and other medical professionals to help identify children with hearing loss at a younger age, adding that "only one-half to two-thirds of children met the guidelines" across participating states.

This article was republished with permission from MedPageToday

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Some 1 Like You

By Makayla Allison

Our 6-year-old daughter, Lily, was recently diagnosed with Ehlers Danlos Hypermobility (EDS-HT). We received this diagnosis only after she acquired more than three dozen symptoms and diagnoses of uncertain significance, ranging from global joint pain and muscle weakness to tinnitus, and over the course of nearly five years.

It was a long and isolating time for our family as we tried to figure out what was going on. We so badly wanted to connect with someone who understood what our little one was going through, and when I asked Lily’s specialists if they could connect us with anyone, the answer was never yes due to privacy laws. Without a diagnosis it is nearly impossible to find groups of people in the same situation to talk to. And it can be even more frightening when the uniqueness of your symptoms isolates you even more.

The discovery of how Lily’s condition affected her hearing was both transparent and innocent. When Lily was 4 years old she asked me if the invisible bumblebees were going to sting her. She was so confused why she couldn’t see the bees that buzzed around her ears. It was shortly after she was referred to an ENT that we learned about tinnitus and that the sounds she hears come from inside her head.

Our daughter had a big desire to find a friend like her, but looking for someone else experiencing the same health challenges online, without posting them in great detail, was proving to be an impossible task. Her dreams inspired us to create Some 1 Like You (S1LY), an organization that connects people privately based on whatever health conditions they are experiencing, regardless of whether or not they’ve received a diagnosis.

According to the documentary film Undiagnosed: Medical Refugees, “The total number of undiagnosed patients is unknown but considered to be vast.... It takes an average of 7.6 years in the U.S. to uncover a rare disease diagnosis. Worldwide there are an estimated 350 million people living with a rare disease; add to [that number] patients still waiting for a diagnosis, patients who have been misdiagnosed, and adults and children who have diseases not yet named or recognized. Being ‘undiagnosed’ is not commonly considered to be an identity, but it should be. Helping people who are ill to feel that others are supporting and advocating for them, and know that they exist, can make all the difference in the world.”

Our mission for S1LY is to privately connect people across symptoms and diagnoses to empower the individuals facing these complex challenges. S1LY is unique because we can perform that search for people, while also keeping their health information private: To make these matches we take only their email address, as well as the health qualities, or groups of qualities they possess and are looking for in someone else.

Once a match is made, the email addresses of those members are shared with each other, and communication is then done only between members. It is our hope that this vast sharing of knowledge and resources among patients will make its way back to physicians and impact treatments as a whole across diseases.

S1LY has developed a Gifted Membership program to cover the lifetime membership fee to Some 1 Like You for constituents of qualifying organizations. 100 gifted memberships have been donated to the Hearing Health Foundation community. The first 100 people to submit their Connect Contact Forms to S1LY with the code “HHF100” will receive lifetime memberships to privately connect with Some 1 Like You members.

If you would like to explore gifted memberships for your patients or members at no cost, please email Makayla at gifted@some1likeyou.com. A portion of the proceeds of every S1LY membership goes to funding research on Ehlers Danlos Syndromes.

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The Importance of Early Intervention

By Frankie Huang

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May is Better Hearing and Speech month and Hearing Health Foundation (HHF) would like to take this opportunity to raise awareness on the importance of early intervention for hearing loss in children, and the significant impact it can have on language development.

Hearing Health Foundation was instrumental in advocating for the Universal Newborn Hearing Screening legislation, as today 97% of babies are screened before they leave the hospital. In 1993, that number was 5%. Approximately 3 out of every 1,000 children in the United States are born deaf or hard of hearing. More than 90 percent are born to parents with typical hearing. Fortunately, early identification allows children with hearing loss to receive help they need during the first two years of life, a critical period for the development of speech and language skills. The earlier a child’s hearing loss is detected, the sooner the family can gather as much information as possible to make the best decision for their child’s language and communication approach.

With early intervention, children with hearing loss are able to develop language skills to help them communicate freely and actively learn. There are many services available to support children. For example, the Individuals with Disabilities Education Act (IDEA) ensures all children with disabilities have access to services they need for a good education. In addition, Head Start and Early Head Start are federally funded programs to help young children of low-income families become better equipped to succeed in school.

However, if the child’s hearing loss is left undetected or untreated, hearing loss can negatively impact a child’s language development. Delayed intervention can also adversely impact a child’s language development. One study had found that children who received earlier amplification or cochlear implantation had better language outcomes. Maternal education and communication modes used during early intervention can also improve language skills over time. A longitudinal study concluded that children with permanent hearing loss enrolled in an early intervention program before the 6 months of age developed on par with age-appropriate language skills than those who were enrolled after 6 months of age.

Similarly, another study had suggested that early enrollment in intervention programs were linked to higher language scores. It concluded that children enrolled before 11 months of age showed better vocabulary and verbal reasoning scores at 5 years of age compared with those enrolled later. Children that were enrolled later may experience delays that can interfere with academic development and comprehension in the classroom.

In the same study, the results suggest that family involvement was a contributing factor for the best outcomes of early intervention. Positive language outcomes were correlated with families that were highly motivated and active with their child’s intervention, while limited family support was associated with poor language outcomes. Also, families who were actively involved with early intervention were more likely to communicate better with their children, which contributes toward their overall growth. However, it is also important to consider the contrary; a lack of family involvement poses the largest challenge to early intervention. Specifically, a systematic review on the follow-up rate in newborn hearing screenings found that, on average, 20% of babies who failed the initial screening did not return for follow-up testing. The high loss to follow-up is believed to be attributed to a lack of adequate knowledge of the risks of hearing loss. This is the largest threat to the success of the newborn hearing screening program, as it becomes the family’s responsibility to follow-up on care beyond the initial hearing screening prior to discharge.

It is important to remember that hearing loss can occur at any time of life. Some forms of hearing loss do not appear until a child is a toddler or enters school, or even later. In addition, illness, ear infections, head injury, certain medications, and exposure to loud noise are all potential causes of hearing loss. In particular, recurring ear infections may negatively affect language development because of the resultant fluctuating hearing loss’ lack of steady auditory input necessary for speech and language development.

Even if your child or a child of a loved one does not have hearing loss today, Hearing Health Foundation strongly encourages regular checkups and annual hearing tests performed by audiologists, ENTs, pediatricians, or other health providers to monitor potential changes in hearing. These professionals are also excellent resources for intervention services to help overcome barriers to communication.

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