Join Cochlear in celebrating National Microtia Awareness Day!

This post was originally written for The Wire, a blog for Cochlear Americas recipients.


November 9th, National Microtia Awareness Day in the U.S., is dedicated to spreading knowledge and hope about microtia, a congenital birth defect which derives its name from the Latin term for “small ear.” Approximately one child in every 9,000 is born with microtia in which the appearance of one or both of the outer ears is affected with a smaller, or abnormally shaped, ear or sometimes, no ear at all. Microtia is often accompanied by atresia, which is the absence or closure of the external auditory ear canal and results in hearing loss in the affected ear.

National Microtia Awareness Day’s purpose is to educate the general public about this rare condition and provide support to families who may have a child affected by microtia. Depending on where families live, medical professionals may be very knowledgeable about the condition and can quickly educate and reassure parents. In other regions, the condition is rare enough that misinformation may lead to unnecessary concerns about their child’s future.

Creating awareness, acceptance and reducing the stigma associated with microtia and atresia, along with medical and technological advances has improved the lives of those living with these conditions. Ear reconstruction and prosthetics may be available options for children born with microtia. Hearing loss in the affected ear may be helped with bone conduction hearing devices, such as Cochlear’s Baha sound processor. Whatever path a parent chooses for their child’s individual needs, they will benefit by the resources and support that’s now more readily available through enhanced awareness.

National Microtia Awareness Day was established in 2016 by Melissa Tumblin, founder of Ear Community. As a parent of a child with microtia and atresia, Melissa founded Ear Community in 2010 to provide information, support and resources for all of those affected by these conditions. Since its inception, Ear Community has brought together over 6,500 people from around the world through its events and its online community to share experiences, knowledge and resources. Cochlear is proud to support the important work of the Ear Community and we invite you to learn more here.

Please help raise awareness and share your support on social media by using #MicrotiaAwarenessDay.

Read stories from children with microtia who have been helped to hear: Paige, Sixten, Eliana, Alana, and more here.

 

 

November 9 is Microtia Awareness Day

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November 9th is the first ever Microtia Awareness Day in the US, and is dedicated to spreading hope and knowledge concerning the congenital birth defect, which is named efter the Latin terms for little ears.

Approximately one out of every 8,000 babies are born with Microtia – a malformed outer ear – either on one or both sides. Children born with microtia will usually have a functioning inner ear, but as the outer and middle ear are affected, they will have conductive hearing loss. For children with microtia a conventional hearing aid is more than likely not an option, however they may benefit from a Baha solution that doesn’t require an outer ear to sit on and can bypass the problem and send sound directly to the inner ear.

The Ear Community Organization founded Microtia Awareness Day in 2016 and was submitted by the Tumblin family. Melissa Tumblin founded Ear Community in 2010 after stumbling through the hurdles and challenges of finding answers for her daughter when she was born with Microtia. Since then, Ear Community has brought over 6,500 people together from around the world at the organization’s events making it possible to share experiences and resources. The community is made up of not only children and adults with Microtia and their families, but teachers, advocates, and medical professionals from around the world who foster awareness and assistance for this amazing group of people. Board members either have the condition or a family member who does, so they have close personal experience with the obstacles from a myriad of perspectives. The Registrar at National Day Calendar approved Microtia Awareness Day in October.

Mark the calendar for Microtia Awareness Day for November 9th and think of the number 9 as the shape of an ear!

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Download the Atresia/Microtia folder here

In the news: Baha Attract surgery helps people hear again

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Seven-year-old Paige from Wisconsin, USA, was born with single-sided deafness and no ear canal on her right side.

As an infant she wore a Baha Softband, allowing her to hear and communicate just like other children. Now, at seven, she was finally fitted with a Baha 5 Attract System!

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”It’s a little more freeing”, Audiologist Sarah Childress of SSM Health said. ”So if they want to take it off and go swimming or do other activities there isn’t a post getting in the way. The other issue is the device itself has been upgraded so the computer chip on the inside is working much better, and it’s able to pair wirelessly with technology, which is giving patients an easier time out in the real world and it actually goes directly to iPhone so they can make some adjustment using an app on their phone.”

A piece of technology that could help many.

“There’s certainly a lot of patients out there that could benefit from this technology that don’t know about it so hopefully we can serve those people,” Dr. Justin McNamar added.

See the video and read the whole story here!

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Ear Community brings people with atresia/microtia and hearing loss together

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Ear Community is a charitable organization that supports people with Microtia, Atresia, Hemifacial Microsomia (HFM), Treacher Collins, Goldenhar Syndrome or a hearing loss. It’s founded by Melissa Tumblin, a mother whose daughter was born with Microtia and Atresia.

Cochlear Americas has been a sponsor for years – and in 2014 alone was able to help children like Milago, Eliana, Dustin and Randy hear with a Baha System.

Soon it’s time for the Ear Community’s popular Summer picnics to kick off again. It’s a great opportunity for Microtia and Atresia families to come together and share experiences. Medical professionals such as surgeons, anaplastologists, ENTs, audiologists, and therapists along with the world’s leading hearing device companies are on site to help educate people on options on surgery and hearing loss.

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Natasha and Becky with Cochlear Americas educating families on the Baha 4 Attract System in 2014

This year’s picnics will take place in Australia, Denmark, Pennsylvania (USA), Colorado (USA), Washington (USA), and South Africa:

Melbourne, Australia | Saturday, March 14, 2015
Time: 11AM to 3PM
RSVP to Lisa at: AustralianEarCommunityPicnic@hotmail.com

Hellerup, Denmark | Sunday, May 31, 2015
Time: 11AM to 3PM
RSVP to Melissa at: DenmarkEarCommunityPicnic@gmail.com

Pittsburgh, PA | Saturday, June 13, 2015
Time: 11AM to 3PM
RSVP to Kim at: PittsburghEarCommunityPicnic@gmail.com

Broomfield, Colorado | Saturday, July 25, 2015
Time: 11AM to 3PM
RSVP to Melissa at: ColoradoMicrotia@hotmail.com

Seattle, Washington | Saturday, August 8, 2015
Time: 10AM to 2PM
RSVP to Jodi or Jaime at: SeattleEarCommunityPicnic@gmail.com

Johannesburg, South Africa | October (TBD), 2015
Time: 11AM to 3PM
RSVP to Mark and Melissa at: SouthAfricaEarCommunityPicnic@gmail.com

Cochlear is a proud partner of Ear Community and looks forward to another fun-filled year ahead! Visit earcommunity.com to learn more about how you can help – or be helped!

 

Five year-old boy without ear can hear again with the magnetic Baha Attract System

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Sixten was born in Sweden as the second of three boys. What set Sixten apart from his brothers was that he was born without external ear and ear canal on his right side, a condition known as atresia/microtia. As a result, he had a hearing loss that could not be helped with regular behind-the-ear hearing aids.

His parents, Susanne and Jonny, first heard about the Baha System from their hearing care professional when Sixten was about one year old.

“Our doctor told us there was a hearing device suitable for Sixten and wondered if we wanted to test it,” recalls Jonny. “Not that long ago apparently, it was thought that hearing in one ear was enough. But now research has advanced and now we know that unilateral hearing loss is a bigger handicap than previously thought.”

In Jonny’s and Susanne’s mind, communication itself is primary, how it is done doesn’t matter as much. If there was a way to help Sixten hear and to communicate – they wanted to do it.

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Used Baha Softband before surgery

Sixten began to wear a Baha sound processor on a Baha Softband from when he was one and a half.

“We are as sure as can be that Sixten is helped by the Baha device,” says Susanne. “We clearly noticed a difference in Sixten’s mood – he perked up and was more attentive when he had the Baha Softband on.”

By the spring of 2013, Sixten’s parents were convinced he was hearing well with his device and decided to take the next step and get an implant. The surgery went well, but a few months later Sixten dislocated his abutment after falling down from a table. When they went in to see their doctor about it, he recommended switching to the magnetic Baha Attract System.

Susanne and Jonny thought it sounded perfect for their son. So in the summer of 2014, Sixten got his new Baha Attract System.

“In the very beginning, we decided to try the Baha Softband because it was easy – no surgery,” says Susanne. “When we felt sure that he was being helped by the Softband we decided on the abutment. After he had his little accident and we heard about the Baha Attract, it was an obvious choice. Nothing is protruding through the skin and the sound processor stays put. If it had been available when Sixten was younger, we definitely would have gone with it.”

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Doesn’t fall off

During our four hour visit with Sixten and his family, the little guy is not still for a second. He hangs upside down, gets thrown up in the air by his dad, runs around and wrestles with his older brother – and the sound processor stays in place. When it does get knocked off – after some especially boisterous wrestling – it’s caught by his safety line and Sixten just pops it back on.

Baha-Attract-magnet-doesnt-fall-off“We’re just so relieved that he is so confident with it, and that he’s able to play just like other children,” says Sixten’s father.

According to Sixten’s parents, while both the Connect and Attract systems provide significant hearing benefits, the biggest advantages of the Baha Attract, compared to the Softband and the abutment, are how it looks and that it’s care free.

“It’s nice not to need the daily care,” says Susanne. “The skin is intact and he has no problems with infections.”

Can’t hear without it

Sixten is clearly fond of his Baha sound processor and doesn’t want to be without it for longer periods of time. As soon as he doesn’t have it on, his parents and teachers notice that he starts getting agitated, even a bit difficult, and tired from concentrating to hear.

“Previously he could be without it for maybe a day,” says Susanne. “But now he wants to have it on all the time. He says he can’t hear without it. If it falls off he instantly fixes it himself. He always has the safety line on so it won’t drop on the floor.”

Baha-Attract-magnet-children“Here – try it on!” Sixten’s older brother listens through the magnet and sound processor while blocking his ears, to get an idea of how bone conduction works.

Magic Mini Mic

The family also enjoy the benefits of the wireless accessories, particularly the Cochlear Wireless Mini Microphone.

“The first time we tried the Mini Mic, we were outside and I had it clipped to my collar and Sixten could hear me even though he was far away, and he just cried ‘Mom, it’s magic!’”, smiles Susanne. “He uses it also to watch TV.”

“And Sixten – what do you think about your Baha sound processor?”

“It’s great because I can hear! It’s good to have a hearing device.”

“Is there anything you’d like to have?”

“Yes! Battery doors with T-Rex on them!” exclaims Sixten with a big grin.

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Eliana, 3, finally gets the gift of a Baha 4 Sound Processor!

Eliana-Baha-hearing-loss

Three-year old Eliana was born with hearing loss. Her right ear is affected by atresia/microtia, which makes it impossible for her to use a behind-the-ear hearing aid.

Eliana’s parents first learned about the Baha System at a picnic for families with atresia/microtia organised by the Ear Community in California, USA. There, Eliana was able to try a Baha sound processor on a Baha Softband for the first time.

“Her reaction was priceless!” Eliana’s mother Veronica recalls. “I asked her if she could hear and she said yes. Was it loud or was it perfect and Eliana said it was perfect.”

When Eliana got home, she told her father, Santiago, all about the “noise maker” she had been wearing and how much she wanted one.

Veronica and Santiago inquired about the Baha System through their audiologist. Unfortunately, the family was denied insurance coverage for the device and the out-of-pocket cost was beyond what the family could afford. They were encouraged to apply again through the appeals process and were denied a second time. With no other avenues left, Veronica decided to apply to the Ear Community for help.

This August, Eliana was fitted with a new Baha 4 Sound Processor on a Baha Softband. Driving to the audiology office, Veronica said that Eliana kept singing in the car: “I’m gonna get my hearing aid, I’m gonna get my hearing aid.” It was a very joyous day for Eliana and her whole family.

Read more about Eliana and her Baha journey over at Ear Community!

“One year on from the greatest gift for our girl” – how one community raised enough money for a little girl to get ear reconstruction

Alana-Baha-user

In August 2012, two Australian parents decided to start raising money to give their then three-year-old hearing impaired girl an operation that could only be done 11,000 kms away in the US – and had the potential to change her life forever.

Last year on August 13, little Alana finally received her life-changing surgery, correcting her malformed external ears and giving her the gift of hearing with a bone conduction device.

It was all done thanks to the generous community of Bundaberg in Queensland, Australia who raised $108,000 for the family to help their daughter get the surgery she needed.

Four weeks after the surgery, Alana’s fifth birthday came around while she was recovering in her hotel room.

“Taking her for a hearing test that afternoon, we just hoped they’d showed improvement”, says Mom Emma Reid. “But we were in for a huge shock. ‘Alana’s hearing loss is now only moderate to mild,’ the doctor said. ‘And it’s likely to improve further in the next few months.’ It was the best birthday gift we could have ever given her.”

Today Alana is six and goes to school like any child with normal hearing. And she loves her new ears!

“I know she will grow up very grateful knowing the gift she was given by a community that will forever be in our hearts”, says Emma.”

Read more about Alana’s amazing journey.

Alanas brother BaileyAlana

For someone with Alana’s medical condition, atresia/microtia, bone conduction devices are the only option for better hearing. Due to their deformed ears and ear canals, they cannot benefit from in-the-ear hearing aids. Now the Centers for Medicare & Medicaid Services (CMS) in the United States have proposed a new rule to eliminate Medicare coverage of bone anchored hearing solutions. This means that for people like Alana, the gift of hearing will no longer be available to them.

Help us stop this from happening by visiting www.HelpNowHearAlways.com and signing the petition!