National Microtia Awareness Day is on November 9th!

September 20, 2020 By Leave a Comment

National Microtia Awareness Day is on November 9th!

National Microtia Awareness Day started in 2016 and was established by our Ear Community Organization! The purpose of National Microtia Awareness Day is to help promote public awareness of Microtia & Atresia. Our hope is that families who have new babies born with Microtia & Atresia will leave the hospital armed with more answers than questions, and their dreams for their children intact. If more people learn about Microtia & Atresia, they will be kinder and more accepting. It is also our goal for children and adults with Microtia to realize that they are not alone and that little and missing ears can never hold you back. Through this national day, families can find out about organizations and resources for information and support. 💙👂💙

The Microtia & Atresia community has always wanted to come together and know that no one is alone with Microtia and Aural Atresia. The Ear Community Organization has created a home for Microtia and Atresia individuals and their families through our online support groups and our national awareness day. Over the years, National Microtia Awareness Day has been embraced and recognized by families and medical professionals all over the world! Click here to learn more about National Microtia Awareness Day.

For 2020, we will be offering (3) different stores to purchase official NMAD merchandise from. A portion of the proceeds from all of these items goes directly to the Ear Community Organization for us to benefit the Microtia & Atresia community. This year, we have fun prints on shirts, socks, masks, gaiters, phone covers, backpacks, pillows, pins, stickers and more.

Please note the different order deadlines for each online store:

Order by October 3rd
This store offers International shipping! This store has awareness day shirts by Ear Community!

Order by October 6th
This store offers International shipping! This store has masks, socks, backpacks, mugs, gaiters, pillows, sheets, accessories and more!

Order by October 12th
This store only ships in the United States! This store has Ear Community’s traditional 2020

https://stores.inksoft.com/earcommunity/shop/store

All three online stores will also be listed on Ear Community’s

home page at: www.EarCommunity.org

A special “thank you” to Dr. Leslie Gonsette for creating the designs on our Ear Community store awareness t-shirts! Dr. Gonsette is a mother to a child born with Microtia & Atresia and she is also a board certified pediatrician and an Ear Community Board Member. A special “thank you” to artist and advocate Priscila Soares for designing our fun designs through the My Lucky Ears Store for Microtia. Both Priscila and her son have hearing loss. She wears a BAHS and her son wears a cochlear implant. Priscila also created a piece of art honoring our National Microtia Awareness Day three years ago in the image of Ally Tumblin of Ear Community. Today, this piece of art hangs in the front lobby of the US headquarters for Oticon Medical. A special “thank you” to Sloan Coleman TinyLittleMonster for helping us again with this year’s design for our traditional National Microtia Awareness Day t-shirts!

Thank you to everyone for embracing our special day on November 9th and for embracing our Microtia & Atresia Community through the Ear Community Organization!

Ear Community 💙👂💙
Filed Under: Events, History

Capito’s bipartisan companion bill requires private insurance coverage of hearing aids

September 13, 2020 By Leave a Comment
By 

Senator Shelley Moore Capito (R-W.Va)

 

U.S. Sen. Shelley Moore Capito (R-WV) on Sept. 8 proposed bipartisan legislation that would require private insurance companies to provide coverage for hearing aids.

“Many of us take for granted the gift of hearing and how often we rely on our senses to effectively communicate with one another,” Sen. Capito said. “It is important that we take the necessary steps to improve our health insurance systems and ensure these critical devices are readily available for those who need them.”

Sen. Capito sponsored Ally’s Act, S. 4532, with cosponsor U.S. Sen. Elizabeth Warren (D-MA) to ensure private insurance companies specifically cover osseointegrated hearing devices (OIDs), including bone-anchored hearing aids (BAHA) and cochlear implants, according to a bill summary provided by Sen. Capito’s staff.

“OIDs are even more crucial for individuals born with hearing deficiencies, as the first five years of life are important for speech and language development,” said Sen. Capito. “I’m proud to introduce Ally’s Act, which will help establish better access to these critical hearing devices for those that need them.”

S. 4532 is the companion bill to the same-named H.R. 5485, introduced in December 2019 by bill sponsor U.S. Rep. Joe Neguse (D-CO), who named the measure in honor of Colorado-native Ally Tumblin, 10, who was born without a right ear or hearing canal and required the use of a BAHA. Following an insurance denial for Ally’s hearing device, she and her mother formed the Ear Community organization to help advocate for insurance coverage of these hearing devices.

Along with Ear Community, according to a one-page background document on the bill, numerous supporters also have endorsed the measure, including the American Cochlear Implant Alliance, the American Academy of Audiology, the American Speech-Language-Hearing Association, and the American Society of Pediatric Otolaryngology, among many others.

Link to article.

Filed Under: Events, History

Warren, Capito Introduce Ally’s Act

September 13, 2020 By Leave a Comment

September 09, 2020

Warren, Capito Introduce Ally’s Act

Legislation would require insurance providers to cover critical and life-altering hearing aid devices

Bill Text (PDF) | One-Pager (PDF)

Washington, D.C. – United States Senators Elizabeth Warren (D-Mass.) and Shelley Moore Capito (R-W.Va.) introduced Ally’s Act, bipartisan legislation that would ensure private insurance companies provide coverage for osseointegrated hearing device (OIDs), including bone anchored hearing aids (BAHA) and cochlear implants. OIDs are a type of hearing aid that benefit a wider range of people with hearing loss and are often the only hearing device that can restore hearing for individuals born with hearing loss.

“Far too many Americans are left behind due to hearing loss and cannot access the devices they need because their insurance will not cover it, leaving many adults and children in the U.S. without a solution to restore their hearing,” Senator Warren said. “Our bipartisan bill is a simple fix that increases access to these specialized hearing devices and gives Americans across the country a chance to be a part of every conversation.”

“Many of us take for granted the gift of hearing and how often we rely on our senses to effectively communicate with one another. It is important that we take the necessary steps to improve our health insurance systems and ensure these critical devices are readily available for those who need them. OIDs are even more crucial for individuals born with hearing deficiencies, as the first five years of life are important for speech and language development. I’m proud to introduce Ally’s Act, which will help establish better access to these critical hearing devices for those that need them,” said Senator Capito.

The legislation is named after ten-year old Colorado-native, Ally Tumblin, who was born without a right ear or hearing canal and therefore requires the use of a bone-anchored hearing aid. Following a denial for her hearing device, Ally and her mother formed the organization, “Ear Community” to help advocate for insurance coverage of these hearing devices to ensure no person is left unable to hear because of private insurance companies’ refusal to cover OIDs.

A companion bill was introduced in the U.S. House of Representatives by Congressmen Joe Neguse (D-Colo.), David B. McKinley, P.E. (R-W.Va.), and Mike Thompson (D-Calif.).

Senator Warren believes that all Americans should have access to health care, including hearing technology.

  • In July 2019, Senators Warren and Rand Paul (R-Ky.) announced the reintroduction of the Medicare Audiologist Access and Services Act, which was originally introduced in 2018 and would ensure seniors and people with disabilities on Medicare have access to a full range of hearing and balance health care services provided by licensed audiologists. In May 2020, Senator Warren and Rep. Tom Rice (R-S.C.) led a letter, along with Congressman Matt Cartwright (D-Pa.), Senator Paul, Senator Kyrsten Sinema (D-Ariz.), Congressman Darren Soto (D-Fla.), Congressman Gus Bilirakis (R-Fla.), and Congressman Rodney Davis (R-Ill.), to House and Senate leadership urging them to include provisions of the Medicare Audiologist Access and Services Act in upcoming COVID-19 packages.
  • In December 2016, Senators Warren and Chuck Grassley (R-Iowa), introduced the Over-the-Counter Hearing Aid Act, which they later reintroduced with Senators Maggie Hassan (D-N.H.) and Johnny Isakson (R-Ga.) in March 2017. The bipartisan bill passed in August 2017 and requires the Food and Drug Administration (FDA) to permit the sale of traditional hearing aids over the counter.
  • She has also partnered with Senator Grassley to encourage the FDA to improve consumer access to hearing aids, and she and Senator Paul have called on Centers for Medicare and Medicaid Services Administrator Seema Verma to remove roadblocks that prevent Medicare beneficiaries with hearing loss from accessing audiology services.
    Link to Press Release.
    Additional links.

Filed Under: Events, History

Ear Community proudly awards its 15th college scholarship

August 24, 2020 By Leave a Comment

The year 2020 has been a year of changes. It seems like every week there is something new going on in the
world. Ear Community has been working tirelessly to continue supporting the Microtia and Atresia
community throughout the uncertainty of this year. We were so thrilled when we received the application letter for our latest college scholarship awardee!

Please meet Clara Hodel, a 17-year-old who lives in Illinois and already has such a clear path ahead of her!
Clara reached out to us at the beginning of the year, shortly before COVID-19 hit the United States.
Despite the drastic changes that have happened over the course of 2020, Clara has held tight to wanting
to get her higher education. But first, a little about this fierce young woman; Clara was born with Microtia and Atresia of her right ear and knew early on she wanted to pursue a career in Orthotics and Prosthetics. She knew that working in that field would give her the opportunity to help people of all kinds of disabilities and knowing how it feels to be a little different would be vital to her success in that career.

Before she was finished with High School, Clara took intro classes for Orthotics and Prosthetics. She said that having Microtia and Atresia is one of the main reasons she chose this career path. Her first step is to get her undergraduate degree at Illinois Central College. Later she would go to a four-year university to finish her bachelor’s. She plans to get a degree in Kinesiology or something similar which would then enable her to get her Master’s in Orthotics and Prosthetics. She plans to get all of this done in about six years! This girl is on fire!

Clara said that “being born with Microtia and Atresia has taught me how to work in situations that may not be ideal. Partial deafness (….) has given me compassion for anyone with a disability and unique way for personal connection.” Clara is not a candidate for reconstruction surgery and has never been aided, yet she has maintained such a positive outlook in life and a fierce drive to excel. She also shared with us that she “want(s) to leave an impact on people’s lives and be able to give them a better life”. We know that Clara can do anything she puts her mind to. She has not let being hard of hearing slow her down, and she certainly hasn’t let the insanity of this year stop her plans from changing the world. Ear Community is honored to be a part of her journey and cannot wait to see the wonderful impact she has on this world.

Ear Community could not do the good work of supporting higher education for college students if it were not for our fantastic sponsors, and donors from the community. Ear Community is your community, it is Clara’s community, and coming together to support others is such a beautiful thing. Good luck with school, Clara, we know you are doing to rock it!

Filed Under: Events, History

Oticon Medical – A company founded on care

August 20, 2020 By Leave a Comment

Over 116 years ago, Hans Demant set out to help his wife, Camilla Louise Demant, who had hearing loss. Passionate to help his hearing-impaired wife, Hans Demant purchased a hearing instrument for her after learning that the Danish born Queen Alexandra of England was wearing one at her 1902 coronation. Hans Demant was intrigued at how this hearing instrument improved his wife’s hearing taking an interest in hearing devices. He later went on to win a contract with the American manufacturer General Acoustic Company and sells his first hearing aid in Odense, Denmark. – the company’s very first hearing aid.

In 1904, Hans Demant, founded the company, today known as Demant. Their son William eventually took over the company and in 1957, donating shares in the company to the William Demant Foundation – the main shareholder in Demant A/S today. Since then, the Demant Group has advanced technology beyond recognition offering many hearing device solutions that help restore hearing loss of all types (from traditional hearing aids to bone anchored hearing aids and cochlear implants). Oticon Medical as one of the Demant Group’s subsidiaries continues to remain firmly founded on care that puts people first.

Today, the Demant Group is a market leader within hearing health and operates in hearing devices, hearing implants, diagnostic instruments and intelligent audio solutions. Thank you to the Demant Group, including Oticon and Oticon Medical for all of the lives that have been transformed with hearing device technology over the past century, including the many lives that have been touched by those who have hearing loss and benefit from these amazing hearing device technologies! 

For more information about Oticon Medical and the Demant Group, including hearing solutions that can help you live the life you want, “because sound matters, ” please visit:  www.demant.com/about/our-historyThank you also to Oticon Medical for being a Proud Platinum Sponsor to our Ear Community Organization and a proud sponsor since 2011! ❤️👂❤️
Ear Community
www.EarCommunity.org
Here are some great images that show how much hearing device technology has transformed over the past century through the Demant Group and Oticon/Oticon Medical.

Filed Under: Events, History

Cochlear celebrates more than 40 years of cochlear implant technology thanks to Professor Graeme Clark’s vision

August 17, 2020 By Leave a Comment

Many of you may not know about the history of Cochlear Americas! The inspiration for Cochlear’s mission came many years ago when a young Professor Graeme Clark saw his father struggle with hearing loss and proclaimed he wanted to “fix ears.” Professor Graeme Clark later went on to invent the first multi-channel cochlear implant! His inspiring story has shaped who Cochlear is and what the organization stands for: it is the foundation of Cochlear’s mission. More than four decades after his success, Cochlear Americas is proud to celebrate how it connects hundreds of thousands of people across the world!

Thank you to Cochlear Americas for all of the lives that have been transformed with cochlear implant technology, including the many lives that have been touched by those who have hearing loss and benefit from this amazing technology! Cochlear implant technology continues to advance forty years later changing lives forever thanks to Professor Graeme Clark’s vision to help his father hear!

For more information about Cochlear hearing solutions that help you “Hear Now And Always,” please visit: https://www.cochlear.com/us/en/home

Congratulations on 4 decades of amazing care and technology helping the D/HOH community! Thank you also to Cochlear Americas for being a Proud Platinum Sponsor to our Ear Community Organization and a proud sponsor since 2011! ❤️👂❤️

Here are some great images that show the past more than 40 year history of cochlear implant technology through Cochlear Americas and timeline of product technology advancement.

 

Thank you!
The Ear Community Organization
www.EarCommunity.org

Filed Under: Events, History

Cochlear community gains two lifelong supporters as Baha Implant helps child hear

July 14, 2020 By Leave a Comment

Cynthia S.’ son James was born with microtia and atresia. After a few solutions that did not work, Cynthia was at her wits’ end. Luckily, Cynthia was able to find pure joy of finally helping her child hear with the Cochlear™ Baha® Implant and Baha 5 Sound Processor.

James was born with microtia and atresia. This typically happens when the pinna (the external part of your ear) is not fully developed and/or the external auditory ear canal is quite narrow, small or closed off. James was therefore unable to hear out of his right ear. At the time of his birth, Cynthia was reassured by the doctor that his left ear was okay and normal, but like any parent, she was concerned about James and his future. At the age of 3, James underwent speech and language therapy with a speech pathologist from home who educated the family about how important it is to hear efficiently. At that time, there were no options available that could effectively support James’ hearing journey, so the family continued to support and develop his speech and language as best they could. Technology then progressed, and at the age of 5, James underwent his first of several surgeries and gained a brand-new ear! The surgeons had taken a rib graft to build James a new ear. Cynthia recalled thinking, “Wow, my boy has 2 big ears!” She explained that it took multiple surgeries to get it to what it looks like now.

Finding support with the Ear Community

Shortly after that set of surgeries, Cynthia found support within the Ear Community. “It was a really validating experience,” Cynthia explained, as she finally understood that James wasn’t the only one with hearing issues. In fact, she learned that there were many individuals that were like him! As Cynthia and James began connecting with the community and its members, the organization was able to educate her about microtia and atresia.

A year and a half later, James had his canaloplasty surgery. The surgery went well, but his external auditory canal and middle ear were extremely small, so James only gained the ability to hear things like jet planes (140 dB). Unfortunately, his hearing gain was only temporary as his ear canal closed up again. James and his family opted not to try the procedure again.

Finding Cochlear

Another year went by and Sick Kids in Canada came into the family’s life. Sick Kids helped educate the family on Cochlear’s products and how they could help James. Shortly after, James became a candidate to receive the Baha System, which consisted of the Baha Implant with the Baha 5 Sound Processor. Cochlear was a perfect fit for James!

You can imagine Cynthia’s emotions during this time as she had scarcely even heard of bone conduction implants before Sick Kids introduced her to the Cochlear technology.

Cynthia chose for him to have the Cochlear Baha Attract System. James was the first child at SickKids to have the Baha Attract system.

James’ activation appointment

Two months later, on James’s birthday, his Baha 5 Sound Processor was activated! Simple words would have a difficult time explaining how happy Cynthia and James were to receive the gift of hearing.

As the years went on, James and Cynthia have remained very involved with the Ear Community, Cochlear, Sick Kids and the hearing community. They have even hosted five Ear Community Picnics, with past picnics seeing members of parliament and school board officials attending.

On November 9, 2019 on National Microtia Awareness Day, the City of Hamilton, ON lit up the city sign in front of City Hall at 7 p.m. in honor of all the little ears in the world. James and Cynthia are so excited that James can finally hear.

 

Was your child born with microtia and atresia? Learn more about solutions to help them hear.
Link to article.

  1. In the United States and Canada, the Baha Implant System is contraindicated in children below the age of 5.
Cara Lippitt

Cara Lippitt is the Public Relations and Marketing Manager at Cochlear Americas. She is responsible for consumer marketing social media and blog content. Cara is inspired by the stories of the recipients that she is able to tell and the incredible journeys they have taken. Cara was born and raised in Colorado and adores the mountains, snow and the world of musical theatre.

Filed Under: Events, History

2020 Ear Community Microtia and Atresia Virtual Events

July 10, 2020 By Leave a Comment

2020 Ear Community Microtia and Atresia Summer Family Picnics

Ear Community hosts picnics every year around the world helping bring Microtia and Atresia families together.  This year’s picnics will take place in the United States in Richmond, Virginia/ Houston, Texas/ Mesa, Arizona/ Nashville, Tennessee/ Palo Alto, California/ Cranberry, Pennsylvania and Hamilton, Ontario – Canada!  It is very exciting for many families! Everyone enjoys attending our picnics and our Ear Community picnics always offer such a wonderful opportunity for Microtia and Atresia families to come together, share experiences with each other, and maybe even make a new friend.  Medical professionals such as world renown Microtia and Atresia repair surgeons, anaplastologists, ENTs, audiologists, and therapists along with the world’s leading hearing device and medical device companies all come together to mingle with us at our picnics, helping educate us on all of our options including hearing loss.

*** We were hopeful that our events would take place outdoors this year just as they have in past years and we know how much Ear Community families enjoy coming together at our picnics. We tried pushing our summer events into the Fall months. Unfortunately, COVID-19 had other plans for us this year. INSTEAD, we have decided to make all of our picnic events virtual via Zoom this year! Please join us during your lunch and enjoy some educational time together with our Microtia and Atresia community families. We will still have some fun entertainment provided during our virtual events. Our picnic host families will be joining us along with some of our Microtia and Atresia medical professionals. We are super excited and grateful to have the continued support of our Ear Community Sponsors who will be joining us too and educating us on the latest in hearing device technology.

This year’s Ear Community Zoom events were made possible thanks to our Sponsors! Without the continued support of our sponsors during COVID-19, this would have been the first year in a decade where Microtia and Atresia families would not have been able to come together with Ear Community. Ear Community is thankful and appreciates the continued support from our Sponsors during COVID-19! Your support means more than you know to our families and medical professionals! ***

We look forward to seeing you at our VIRTUAL Ear Community picnics this year!

Our events are proudly sponsored by Cochlear Americas, Oticon Medical and Med-EL USA!

2020 Ear Community Picnics and Events

Pennsylvania Ear Community Picnic
Pittsburgh, Pennsylvania
* Dr. Noel Jabbour from the University of Pittsburgh Medical Center’s Microtia and Atresia clinic will be joining us along with our picnic host family – the Cook Family! We’ll have anaplastologist, Paul Tanner joining us and James Hermsen of Spokiz. Magician Ray Lucas will intrigue us! A special thank you to our hearing device representatives for joining us – Platinum Sponsors Cochlear Americas (Sharon Carroll) and Oticon Medical (Lisa Reedy) and our Silver Sponsor Med-EL USA (Amanda O’Donnell and Lynn Stephenson).
Date:  Saturday, August 1st, 2020, virtually via Zoom Events
Time:  1PM Eastern Time
RSVP for Zoom invite to Heidi at:  EarCommunityPennsylvaniaPicnic@gmail.com

California Ear Community Picnic
Palo Alto, California
* Dr. Mai Thy Truong and Dr. Kay Chang of  Stanford’s Lucile Packard Children’s Hospital’s Microtia and Atresia clinic will be joining us along with our picnic host family – the Van Dyke Family! We’ll have anaplastologist, Paul Tanner joining us and James Hermsen of Spokiz. A comedy show that will surely make us laugh! A special thank you to our hearing device representatives for joining us – Platinum Sponsors Cochlear Americas and Oticon Medical (Krista Bramlet & Shana Martinez) and our Silver Sponsor Med-EL USA (Amanda O’Donnell and Lynn Stephenson).
Date:  Saturday, September 5th, 2020, virtually via Zoom Events
Time:  11AM Pacific Time
RSVP for Zoom invite to Heidi at:  EarCommunityCaliforniaPicnic@gmail.com

Tennessee Ear Community Picnic
Nashville, Tennessee
* Dr. Ron Eavey, Dr. Scott Stephan, Dr. Marc Bennett, Dr. Margaret McRedmond, Dr. Brandy Stephens and Scott Fiscus (our anaplastologist) of Vanderbilt University Medical Center’s Microtia and Atresia clinic will be joining us along with our picnic host family – the Greene Family! We are looking forward to listening to our special guest, Charlie Greene and his band Betcha perform, which is one of the hottest pop-quartet bands out of Nashville! A special thank you to our hearing device representatives joining us – Platinum Sponsors Cochlear Americas (Tina Castaneda) and Oticon Medical (Amanda Cooley) and our Silver Sponsor Med-EL USA (Amanda O’Donnell and Lynn Stephenson) and James Hermsen of Spokiz.
Date:  Saturday, September 26th, 2020,virtually via Zoom Events
Time:  1PM Central Time
RSVP for Zoom invite to Melissa at:TennesseeEarCommunityPicnic@gmail.com

Arizona Ear Community Picnic
Mesa, Arizona
* Thank you to the Smith Family for being our picnic host family this year! Microtia repair specialist Dr. Shery Lewin along with anaplastologist, Colette Shrader joining us and James Hermsen of Spokiz. A magic show that will intrigue us! A special guest appearance by Elise Lieberth Haagenson who just had one of her hit songs go viral on TikTok. A special thank you to our hearing device representatives for joining us – Platinum Sponsors Cochlear Americas and Oticon Medical (Dina Panopoulos) and our Silver Sponsor Med-EL USA (Amanda O’Donnell and Lynn Stephenson).
Date:  Saturday, October 3rd, 2020, virtually via Zoom Events
Time:  11AM Pacific Time
RSVP for Zoom invite to Heidi at:  EarCommunityArizonaPicnic@gmail.com

Texas Ear Community Picnic
Houston, Texas
* Dr. Carol Liu, Dr. Rodrigo Silva, Dr. Jennifer Drob and Dr. Sabrina Marciante of the Texas Children’s Hospital’s Microtia and Atresia clinic will be joining us along with our picnic host family – The Mendoza Family! We’ll have a magician who will intrigue us! Anaplastologist Colette Shrader will be joining us and James Hermsen of Spokiz! A special thank you to our hearing device representatives for joining us – Platinum Sponsors Cochlear Americas and Oticon Medical (Lauren Placke) and our Silver Sponsor Med-EL USA (Amanda O’Donnell and Lynn Stephenson).
Date:  Saturday, October 17th, 2020, virtually via Zoom Events
Time:  1PM Central Time
RSVP for Zoom invite to Heidi at:  EarCommunityTexasPicnic@gmail.com

Virginia Ear Community Picnic
Richmond, Virginia
* Thank you to the Herzing and Logan Families for being our picnic host families this year! Microtia repair specialists Dr. Angelo Leto-Barone from Johns Hopkins and Dr. Arturo Binilla along with naplastologist Colette Shrader will be joining us and James Hermsen of Spokiz! A special guest appearance by Elise Lieberth Haagenson who just had one of her hit songs go viral on TikTok. A special thank you to our hearing device representatives for joining us – Platinum Sponsors Cochlear Americas (Martha Schley Smith) and Oticon Medical (Nicole King) and our Silver Sponsor Med-EL USA (Amanda O’Donnell and Lynn Stephenson).
Date:  Saturday, October 24th, 2020, virtually via Zoom Events
Time:  1PM Eastern Time
RSVP for Zoom invite to Heidi at:  EarCommunityVirginiaPicnic@gmail.com

Canada Ear Community Picnic
Hamilton, Ontario – Canada
* Thank you to the Stewart Family for being our picnic host family this year!
Date:  Saturday – CANCELLED FOR 2020 DUE TO COVID-19.
Time:  11AM to 3PM
RSVP to Cindy at:  CindyStewart2008@gmail.com

Melissa Tumblin,
Founder and Executive Director of Ear Community
Founder of the Microtia and Atresia Support Group on Facebook

Filed Under: Events, History

Mother gets tattoo of Baha Sound Processor to celebrate son with ear malformation at birth

June 4, 2020 By Leave a Comment
Hearing loss in children
– by

Britney T.’s son, Myles, was born with an ear malformation at birth. After Myles was slipping behind with annunciating sounds, his parents acted fast to get him a Cochlear™ Baha® 5 Sound Processor. Eager to celebrate his sound processor, Britney got a tattoo that matches his Baha 5 Sound Processor. See why Britney is proud of her son:

“Our 5-year-old son, Myles, was born with a birth defect known as unilateral microtia, Grade 3. Microtia is rare and affects less than 1 in 10,000 live births (according to the Centers for Disease Control and Prevention) with various grades ranging from simply a smaller ear to possibly no ear at all.

Doctors have not fully targeted what or how this birth defect occurs, but to our family it made no difference. I did take one dose of a fertility medication called Chlomid to become pregnant, but we will never know if that drug impacted his deformity.

My pregnancy seemed very normal with no complications throughout until one day my water broke at 36 weeks and one day gestation. Even though this was our third child, to me, that seemed too early and I prepared myself for the worst. However, Myles was born very healthy with no immediate concerns. His weight was that of a full term baby and he was thriving.

Noticing his ear malformation at birth

At birth, we instantly noticed that his right ear was folded over, and there was no ear canal present. He passed the newborn hearing screening with 100 percent hearing in the open ear. The other ear was not tested at that time. As time went on, we never really paid his little ear any mind and neither did he. He was a healthy, happy child that otherwise had no concerning medical needs. In our minds, he was perfect!

Over the years, we did notice that he was having a difficult time localizing sound. If he was in one room and I was in another, he would have a hard time locating the sound of my voice. We later learned that this is a classic symptom of single-sided deafness, but again we did not give it much thought because at his wellness checkups, they let us know that he was progressing and reaching age appropriate milestones; that is until his 4-year-old visit.

Referral to speech therapy

He was referred to speech therapy for several delays in the ability to properly annunciate sounds. Not just one or two sounds, but almost all of them. For my husband, and myself, it broke our hearts. We felt like we had failed him by not noticing it sooner. He is the baby of the family, so what we thought was cute baby talk in his speech turned out to be a significant delay.

After beginning speech therapy, he quickly put the pieces together and realized his inability to produce sounds correctly was directly related to his inability to hear them clearly. My very confident 4 year old became a very disheartened self-conscious 4 year old practically overnight. My family acted fast to get access to sound; however, prior to this point, we had never even heard of the Baha 5 Sound Processor.

We hit several roadblocks with insurance, and in full desperation, we reached out to a non-profit organization called the Ear Community. I was trying to find used hearing aids immediately for my son until we could work out all of the insurance hurdles, but to my surprise, they donated a trial bone conduction hearing solution to my son.

He wore that on a Baha® Softband for approximately six months. He began a preschool program in October 2018. The initial teacher evaluation revealed that Myles could only pronounce two out of 26 sounds correctly. By the end of the school year, after being aided, he could pronounce 21 out of 26 sounds correctly!

Ready to have Myles hear his best

We still decided to pursue ear reconstruction surgery in Torrance, California. We drove through the night from our home in Alabama to Dallas, Texas so Myles could get a 3D scan of his normal ear. This scan was used to create the mold for his reconstructed ear. We raised the $25,000 out-of-network fee for the surgery in a matter of 12 weeks and flew to California in early April 2019 to have the 12-hour procedure done.

This surgery was appealing to us as it was a one time outpatient surgery. The new ear mold was made 20 percent larger than the existing ear to account for growth. During the procedure, we also had Myles receive the Baha Implant System1. At that time, my son had a magnet implanted on his skull to hold the Baha 5 Sound Processor.

After six weeks of healing, he was finally able to wear the sound processor again! One of the first things he mentioned after putting the new Baha 5 Sound Processor on the Attract System was being able to hear wind again…something most people take for granted.

My tattoo

Shortly after returning home from our two-week stay in California, I decided to get the Baha 5 Sound Processor tattooed on my skull in the same exact spot as his Baha Attract System. I wanted to ensure he would never feel different and remind him of how brave he was for having the procedure done without complaint.

I did not care that my hair would eventually grow over the tattoo or that the type of Baha Sound Processor he wore may change later on. Having him know it was there was what mattered to me. He loved it so much that I decided to wear it proudly and never let my hair grow back over the spot to hide it.

The Baha 5 Sound Processor technology is amazing and we have no regrets of moving forward with having Myles receive the Attract System. He loves having the ability to simply stick the sound processor on himself instead of struggling with a Softband. Our family is so very grateful for the advances in modern medicine that have allowed our child to hear, when aided, as if he has no hearing loss at all.”

Was your child born with an ear malformation at birth? Give them proper access to sound and learn more today.

  1. In the United States and Canada, the Baha Implant is indicated for children ages 5 and older.
Cara Lippitt

Cara Lippitt is the Public Relations and Marketing Manager at Cochlear Americas. She is responsible for consumer marketing social media and blog content. Cara is inspired by the stories of the recipients that she is able to tell and the incredible journeys they have taken. Cara was born and raised in Colorado and adores the mountains, snow and the world of musical theatre.

 

Filed Under: Events, History

Ear Community celebrates 10 years today – It’s been a decade of helping advocate for Microtia and Atresia families

May 20, 2020 By Leave a Comment

Today, May 20, 2020, our Ear Community Organization turns 10 years old!

IT’S BEEN A DECADE!
Ten years ago today, months after my youngest daughter, Ally, was born with Grade III Microtia and Aural Atresia of her right ear, I sat down at my laptop and decided to start a support group for Microtia and Atresia families right here on Facebook called the Microtia and Atresia Support Group. Today, our support group has close to 9,000 members in it. One year later, on June 11, 2011, my family hosted our first Microtia family picnic in Denver, Colorado where we had over 100 people attend including one Microtia repair surgeon. The following year on August 16th, 2012, Ear Community became a nonprofit organization. Since May 20th, 2010, we’ve never looked back!

Over the past decade, our organization has brought nearly 15,000 people together at 70 of our events here in the United States and in other countries. Our educational website has helped tens of thousands of families and medical professionals connect and learn more about Microtia and Atresia. We have helped children and adults in need who have hearing loss by donating over 130 bone conduction hearing aids. We have helped 15 college students with college scholarships. We’ve been to the FDA, initiated genetic research on Microtia and Atresia…we’ve advocated on Capitol Hill and even had legislation introduced that will help tens of thousands of children and adults obtain insurance coverage for bone anchored hearing aids and cochlear implants.

* A special thank you to Heidi Jeffs who not only is my only Ear Community employee besides myself, but for all of her passion and energy to help me help Ear Community do the good that our organization does! Thank you to our support group admins for all of their help and to all of our picnic host families who have helped make our picnics happen over the years! Thank you to our board members and to our donors too, for your tremendous support to our organization!

A very special thank you to our amazing sponsors who have supported Ear Community all these years, helping educate about all options and put smiles on our community’s families at our events!
Platinum Sponsors:  Cochlear Americas and Oticon Medical
Silver Sponsors:  Med-EL, Stryker and Medtronic ENT

💙👂🦋💙👂🦋💙👂🦋💙👂🦋💙

 

Thank you for being a part of Ear Community all these years!
Melissa Tumblin
Founder – Executive Director
and our entire board of directors!
www.EarCommunity.org

Filed Under: Events, History
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