Tag Archives: Microtia and Atresia

Advice from 8 Ponto Parents

Finding the right hearing solution for your child’s individual hearing loss can be difficult. While research is an important aspect of finding the right solution, we also believe there is power in stories and listening to what others have to say about their experience.  Below we’ve brought together advice from eight parents who chose Ponto for their children.

Research, research, research

“I just want to make other people aware that there are other options. Check other resources to make sure you are making an informed decision right away. I quickly learned that no one is going to give me all the information I need.” – Caroline Mannato

“Research those (Facebook and other groups) boards. Don’t allow yourself to be saddled with one device because your audiologist doesn’t want to try something different. Fight for your children’s rights. Make sure you know you have options.” – Jillian Shelton

Social media groups can not only provide community but valuable information

“Look to social media support groups on Facebook, like this one and this one, to help research options and talk to adults and who are wearing the devices you are interested in. – Liz Anderson

“Ultimately, what helped was knowing there are people just like her out there.” – Theresa McCorkell

“The stories that adults and older children were telling were the stories we needed to hear.” – Erin Bullock

Trial other options

“Insist on trialing all options. It’s definitely worth the time it takes.” – Laurie Jarvis

“Try all your options, on your child and yourself, to help you make the most informed decision for your family.” – Heidi Jeffs

“If you have an audiologist who is not open to trying a different company, push or go elsewhere – just do your research.” – Liz Anderson

“Advocate, because our children need us.” – Shannon Gordon

Interested in learning more about these Ponto families? Click below to read more in-depth into their individual hearing journey in our new Patient eBook.

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Learn how Heidi Jeffs chose the Ponto 3 for her daughter Rosalee and became an advocate in the hearing loss community

We hear time and time again from parents of Ponto users that doing research into all the hearing options available is the best way to make the most informed decision. For Heidi Jeffs, research into different hearing groups is what led her to not only find the best hearing solution for her five-year-old daughter Rosalee but become an advocate in the hearing loss community.

Rosalee was born with microtia and atresia on her left side and fit with a bone anchored hearing device on a soft band given to her by her audiologist.

“We met with our audiologist and wanted her to have a device. We didn’t know any different or know of other options.”

Shortly after, Heidi learned about Ear Community, a non-profit organization that offers a supportive community for individuals born with microtia and atresia, and other varying degrees of hearing loss.

The community, which was started by Melissa Tumblin whose daughter Ally was born with microtia and atresia, provides support through their online Facebook group as well as annual picnics around the country.

Through her involvement with Ear Community, Heidi began meeting other parents and bone anchored hearing system (BAHS) users and found that feedback was a common issue.

“We were having a lot of feedback issues. Some moms were commiserating about it and then there was one mom whose daughter had bilateral Pontos and she was like ‘what are you guys talking about?’ The woman said her daughter could lay on a pillow with her Pontos on and it wouldn’t squeal. So I started looking into the Ponto devices.”

The Ear Community picnics were where Heidi became familiar with Oticon Medical and her daughter was able to try on a Ponto device for the first time.

“It didn’t sound echoey. It was just clear. I was flat out convinced. Then the more and more that I learned about the company I was even more impressed. It really felt like Oticon Medical stood by their motto ‘People First’.”

When it was time for Rosalee to upgrade, she tested the Ponto 3 on a softband and said yes to switching to the Ponto. Heidi notes that before, it was difficult to get Rosalee to wear her device, but since switching she hasn’t complained once about the softband being uncomfortable or sore, making the transition very easy and enjoyable.

“Between the quality of products and the integrity of the company, it is so far above the others out there.

Since beginning this hearing care journey with her daughter, Heidi has served on the board of Ear Community for three years and is now a full-time staff member. Additionally, she served on the board for the Idaho Council for the Deaf and Hard of Hearing and was chosen as a parent representative for Idaho to attend the EHDI conference – an early hearing detection and intervention event. To all parents looking to learn about hearing options for themselves or their child with hearing loss, she recommends trying all your options, on your child and yourself, to help you make the best decision for your family.

 

Are you interested in learning about the Ponto 3 SuperPower and how it can provide early support for children and adults with hearing loss? Click below to be connected to a representative from our team.

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“We’re Just Trying To Do What’s Best for Him” – A Parent’s Perspective

Davin is 8 years old and was born with bilateral microtia and atresia. In the video below, Davin and his mother, Shannon Gordon, talk about his hearing journey with his Ponto’s and their experience with the new Ponto 3 SuperPower.

“Davin’s hearing is one of the most important things in our life and we’re just trying to do what’s best for him.” – Shannon

Interested in learning more about the Ponto 3 SuperPower? Click the button below to be connected to a representative from our team.

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The Gift of Hearing Travels to Africa

We’d like to introduce you to someone very special!

Meet Raheeg Abdelrahman, a four-year-old girl living in Sudan with her younger twin siblings, her mother, and her father, Eltahir.

Raheeg was born with bilateral Microtia and Atresia, and when her family couldn’t find a suitable hearing device in Sudan, they traveled to Egypt to meet with an audiologist who they hoped could help them find a solution. Unfortunately, the family was unable to find an affordable solution and were forced to return home without a device for Raheeg.

That’s when we heard about Raheeg and her family through our friends at the Ear Community and partnered with them to provide two Oticon Medical Ponto Plus hearing devices for her.

The devices were sent to Egypt where Raheeg was fitted with her devices with great results:

 “She can answer our call easily and surely this will help her to receive her lessons like other kids…it is difficult to get words to express my thanks but I say God bless you!

Please convey my deepest heartfelt thanks and appreciation to all of Oticon Medical staff for the help and support they provide to everybody in our Ear Community, and special thanks for Mr. Alan Raffauf, Tove Rosenbom, and Claus Frees Horneman…THANKS to YOU dear friends for giving me hope that my daughter can go to school, hearing sounds and practice her life like other kids.  Thank you for making my impossible dream become real!”

– Eltahir Abdelrahman

We’re honored to have had the opportunity to help provide the gift of hearing to another individual with hearing loss and are thankful for our friends at the Ear Community for sharing Raheeg’s story with us!

If you’d like to learn more about Raheeg and Microtia and Atresia, the Ear Community blog is a great resource!

Arkin Gets His Special Moment and Receives Two Ponto Pluses through Ear Community and Oticon Medical Donation

Meet Arkin Silutan Lerio, a 10-month-old boy from the Philippines, born with bilateral Microtia and Atresia. Today, he’s the recipient of two Oticon Medical Ponto Plus sound processors that were donated through the Ear Community Organization.

At three months old, Arkin and his mother experienced a priceless moment—the moment Arkin tried a bone anchored hearing system for the first time. Jhoan, Arkin’s mother, knew from that moment on that her son needed the help of these devices. Just one month earlier she had learned that Arkn had a severe to profound hearing loss in both of his ears. And now, with the device, she was seeing him respond to words and sounds.

However, the family didn’t have medical insurance or the resources to proceed. And many of the medical professionals Arkin saw were not familiar with seeing a child with Microtia and Atresia. But that didn’t stop Jhoan for working to find answers, so she went online to research.

In her research she found the Ear Community Organization and applied for Ear Community’s hearing device donation program.

On August 15, 2016, Arkin proudly received two newly donated Oticon Medical Ponto Plus bone anchored hearing devices and the Oticon Medical Streamer from Oticon Medical that were donated through the Ear Community Organization.

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“Many people helped Arkin along the way in order for him to receive his new hearing devices. A special thank you to Izovelle ‘Icee’ Piedad (audiologist with Philiear Inc.) for helping donate her time to fit and program Arkin’s new Ponto Plus hearing devices! Thank you also to Gabe Murphy, who wanted to give back to the Microtia and Atresia community and help a child hear better. Gabe organized a 5k race fundraiser event in Preston, Idaho for his senior class project. Some of the funds that were raised went toward paying for the shipping of Arkin’s hearing device,” Melissa Tumblin, founder of Ear Community explained.

“Jhoan says that Arkin is already hearing better and that he is mimicking sounds. She says that Arkin is already making new sounds and babbling more! Arkin also has a new friend, his monkey that he has decided to call “Otty” that came from Oticon Medical with his gift of hearing.”

Are you interested in learning more about the Oticon Medical Ponto for yourself or your child? We’d be happy to connect with you an audiologist in your area: click below and let us know!


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You can read Arkin’s story on the Ear Community website here as well.

“Whoa!” is Davin’s Response to His Ponto Pluses

We met Shannon Gordon when she posted a video of her son, Davin, trying his Pontos on abutments for the first time. Shannon shared Davin’s story with us, and now we’d like to share with you too.

“Davin was born bilateral microtia and atresia. He has had bilateral canaloplasty, and Medpor. Davin received his first bone anchored hearing system (BAHS) at 7 weeks old. Two years ago we upgraded to bilateral Ponto Pluses. What an amazing transformation! On February 5, 2016, he had the surgery at U of M hospital. This video is of him receiving his Pontos on the abutments for the first time, 3 months after surgery. He loves them! Thank you Oticon for an amazing product and allowing my son to have the best hearing option out there!”

The video below captured his reaction to wearing his Ponto Pluses on abutments for the first time—3 months after his surgery.

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Resources for Parents and Teachers of Children with Hearing Loss

While hearing systems like the Ponto can help children with hearing loss have a better experience in school, there are additional steps to ensure they’re getting everything they need and that everyone is informed and on the same page. That’s why we’ve put together a “living” folder of resources for parents and teachers to make school as enjoyable and effective as possible.

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A Summer Full of Amazing Ear Community Picnics and People

It’s been another summer full of amazing picnics hosted by our friends over at Ear Community—with a few more still to come! Each year Ear Community hosts picnics all over the world, where families come together to learn from each other, discuss the latest hearing technology, have fun in the sun, and meet other members of the community!

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Custom ‘Pals’ Encourage Children with Bone Anchored Hearing Systems (BAHS)

Weesie Pals are custom stuffed animals that can be made to have a little ear and stuffed toy bone anchored hearing device. Weesie Pals are created by Erin Wozniak who was inspired by her daughter Elyse. Elyse, who’s nickname is Weesie, was born with left-side Microtia and Atresia, meaning her ear did not fully develop. Elyse, now two years old, wears a Ponto Pro on a softband.

“When Elyse was an infant, I wanted her to have some type of toy that she could identify with and a way to reinforce her wearing the Bone Anchored Hearing System (BAHS). Also, you can take the device off of the stuffed animal and put it on anything– even someone else. Even mommy can wear it!”

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When Erin made the first Weesie Pal, a mouse, Elyse loved it and wouldn’t put it down. As an artist and art teacher, Erin is always making things but oil painting and drawing are her expertise. When it came to sewing, she taught herself. She’s a quick study, because now there are a variety of options.

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10-year-old Musician Embraces His Passion with the Help of His Ponto Softband

Meet Vishal, a 10-year-old musician with Microtia and Atresia. We first met Vishal when he posted this message on the Oticon Medical Facebook Page:

A boy.
10 years old – born with Microtia and Aural Atresia.
Student of grade 5.
I grow up in Germany because my Dad has his office out here.
He loves music.
At first he is shocked because his son is born with Microtia.
Then he remembers his conversation with God before I was born.
God was looking for parents for me like the ones I have.
My Dad promised God to be the best Dad ever.
The German Doc told my Dad just after my birth that I would not be able to hear nor speak.
My dad trusts in God and in His ways.
I get a Softband Oticon.
I win a first prize in a music competition in Germany!

Here’s Vishal to share a bit of his musical journey.

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