Tag Archives: Microtia

Woman with short hair and glasses

Honoring Advocate Tammy’s Legacy

In memoriam, Ponto processor donated to a child in need

Oticon Medical has had the privilege of working with so many incredible individuals and families affected by hearing loss, including many who use our Ponto™ and Sentio™ Systems. Over the years we’ve built meaningful relationships with hearing health advocates, who are passionate about supporting others by sharing their personal experiences with hearing challenges.

One of our dearest advocates, Tamala “Tammy” Sullivan, recently passed away. Tammy touched countless lives with her kindness, courage, and unwavering dedication to the hard of hearing community. She offered not only information and guidance, but genuine hope—the kind that comes from someone who has walked the same path and chooses to light the way for others.

To honor Tammy’s generosity and the impact she made, we have donated a Ponto processor to a child in need.

Turning hearing challenges into a passion to help others

Woman with short hair and glasses smilingTammy was especially passionate about helping children access the tools they need to thrive, which is why we felt this donation would be a meaningful way to continue her legacy.

“My family are honored that you are doing this,” said Tracy Sullivan, Tammy’s sister, when we consulted her about the donation. “My sister was a huge advocate for helping kids get what they needed to be successful. She loved to help people and would love this being done in her honor.”

Tammy learned sign language as a teenager and started working with the Deaf community. She was hard of hearing her entire life and was fitted with her first hearing aids as a teenager. When she read about bone anchored hearing systems, she was excited. Her traditional hearing aids had created problems that the bone anchored devices eliminated.

Meet Noah, recipient of Tammy’s gift of hearing

Another longtime advocate, Oticon Medical advocate-Ambassador Angela Sabal, helped us identify a family whose child needed a bone conduction processor but weren’t in a financial position to obtain one.

Woman holding small boy

Noah is two-years-old and was born with hemifacial microtia, which his mother, Jessica, told us was “a surprise” when he was born. The family faced a long process of acceptance, researching the condition, and figuring out what steps to take moving forward.

Because of his condition, Noah is completely deaf on his left side. He has a plastic surgeon on board to reconstruct his ear when he is old enough (around 7-9 years old), an otolaryngologist to do the implantation surgery for a bone anchored hearing device (at around 5-7 yrs old), and an audiologist who Noah’s been seeing every six months since he was born. According to Noah’s otolaryngologist, he would not qualify for the surgery unless he wore a bone conduction device or something similar on a band as a first step. His audiologist loaned the family a bone conduction hearing processor to use until they were able to get one of their own.

The challenge for the family was insurance. They tried to go through their insurer twice, but both times were informed that insurance would only cover a small portion of the total cost. The balance was beyond the family’s means to cover out-of-pocket.

Smiling little boy runningUpon being contacted by Oticon Medical about this donation in honor of Tammy, Jessica reached out to Noah’s audiologist, who confirmed that Noah would be able to use the Ponto being offered. She would just have to bring it in to be programmed for his specific hearing requirements. Jessica thanked Oticon Medical for reaching out and expressed her appreciation upon being informed of this opportunity to treat Noah’s hearing loss.

We will share more about Noah’s progress with his new Ponto processor when it becomes available.

Danica Loves Her New Sentio System

We would like to thank Casey J., Danica’s mother, for giving us permission to share Danica’s experience with her new Sentio™ System.

Our beautiful, funny, brave, smart as a whip, spunky, and sassy Danica was born with microtia and aural atresia. We later learned her microtia and atresia were part of a craniofacial condition called Hemifacial Microsomia, which for Danica, also affects her skull, right eye, soft palate, jaw, mouth and facial nerves. Due to these conditions, Danica has severe conductive hearing loss in her right ear. She also has mild-moderate loss in her left due to a history of ear infections and a perforated eardrum that never healed.

Danica has worn a bone achored hearing system (BAHS) since she was seven-months-old. First on a soft headband, and then she had surgery at six-years-old so she could wear it on an abutment.  Just recently, she made the decision to be implanted with the new Oticon Medical Sentio System, which allows her to wear her bone conduction device on a magnet.

Danica loves how much lighter the processor is, how there’s little to no feedback at all…especially when her thick hair rubs against it. She loves how she can wear it under her hair and no one knows it’s there. She loves how she can wear her bulky headphones with the device and it doesn’t touch them (all the cool kids are wearing the bulky headphones apparently, LOL) and she loves how clear everything sounds!

Danica recently had an audiology follow-up to assess how well her Sentio is helping her and to make any adjustments. She’s so resilient, I often forget how hard of hearing she really is. Her Sentio is bringing her hearing loss up to a slight-mild loss, which is amazing considering her loss is so severe. The audiologist made a few adjustments, and we were on our way.

She is so happy with her decision to get the Sentio magnet implanted, and it makes my mama heart happy, too. Oh, and report cards came out today; she got five A’s and one B. She really has to work so hard. I told her she must be so proud of herself. We know we are.

Please join us in congratulating Danica on her new Sentio System! We also thank her and Casey for their ongoing support of the hard of hearing and microtia communities.

National Microtia & Atresia Awareness Day 2023

Microtia and Atresia: A Primer

We are excited to promote National Microtia and Atresia Awareness Day on November 9! This annual day was established to inform the public about microtia (literal translation: “little ear”) and atresia (absence or closure of the ear canal), their impact on those who have one or both conditions, and potential treatments, including bone anchored hearing systems (BAHS) for associated hearing loss. This day also allows us to celebrate those who advocate on behalf of themselves and loved ones to be treated with understanding, kindness, and respect.

The following is provided as a primer. You can use it to better understand these conditions and to educate others.

What is microtia?

Microtia is a condition that occurs the first trimester of fetal development that causes one or both ears to only partially develop or not develop at all. In some cases, it is accompanied by atresia, which describes ear canals that are either underdeveloped or nonexistent. Many people with microtia also have craniofacial microsomia, which affects facial symmetry and involves differences related to the jaw and general appearance.

How many types of microtia are there?

Microtia is classified according to the following four types:

  • Type 1: Smaller-than-average external ear (pinna) with functioning hearing organs
  • Type 2: Only part of the pinna developed and is undersized
  • Type 3: Very little of the ear exists or functions
  • Type 4: Complete absence of an external ear

Is microtia inherited?

The condition may run in some families, but far more often there is no prior family history. Based on current scientific data about microtia, with and without atresia, it is usually a random occurrence affecting embryos during their early development.

However, in a handful of cases, microtia has been found to affect members in multiple generations of a family, although it sometimes skips generations. Having one child with microtia increases the risk of having another by 5 percent. The likelihood of someone with microtia having a child with the same condition also increases by 5 percent.

How common is microtia?

Microtia, with and without atresia, occurs in approximately 1-5 births out of every 10,000 in the United States. It affects children assigned male at birth more frequently than those assigned female. It most often affects the right ear. Studies have indicated that it occurs more frequently in people of Asian, South American, and Western European descent, but is rarer in those of  African descent.

How does microtia affect hearing ability?

For many people with microtia, it only affects appearance and not hearing ability, so long as they have a functioning ear canal and inner ear organs (i.e., a working cochlea). However, for those with atresia, partial or complete hearing loss may result in the affected ear(s).

What options are available for people with microtia?

Some parents may elect reconstructive surgery for a child missing most or all of their outer ear for cosmetic reasons. This may involve using the child’s own tissue and cartilage, synthetic materials, or a combination to create as realistic appearing an ear as possible.

If enough of a child’s ear canal exists, it may be possible to open it with surgery, thus enabling at least some hearing. If there is no ear canal or surgery to the ear is otherwise not an option, a BAHS (bone anchored hearing system) may be recommended to provide hearing ability.* This might be a bilateral (two-sided) system if both ears are affected or unilateral (single-sided) if only one ear is affected. A full BAHS consists of a small titanium implant screw placed in the skull bone, and a skin-penetrating abutment onto which a sound processor is affixed. Alternately, sound processors can be worn on a soft or hard band without surgery.

For more information about microtia and atresia, including National Microtia and Atresia Day,  please visit www.earcommunity.org.

For more about bone conduction hearing treatments like the Ponto BAHS, please visit www.oticonmedical.com/us.

* Implantation of bone anchored hearing system implants is contraindicated for children under 5 years of age. Not all hearing loss patients are candidates for a bone anchored solution.

Face Mask Alternatives for People without Ears

For many of us, the most challenging part of the CDC’s latest recommendation that everyone should wear a face mask* when going out during the Covid-19 epidemic is finding (or making) masks. However, for people with microtia or anotia, this is compounded by the difficulty of wearing a traditional mask with small or no external ear(s). Fortunately, there are ways around the challenge presented by traditional masks with loops for around the ears.

Making your own face masks for Covid-19 use

As mentioned above, one of the biggest challenges for everyone is figuring out how to follow the latest guidelines on covering your mouth and nose when having to go out for groceries or other necessities during the coronavirus outbreak. The Centers for Disease Control (CDC) have posted helpful DIY guidelines for making and using cloth face coverings on their website. These can be further adapted to fit people without ears using the suggestions below.

Add strings to face masks

If you are making your own face mask, instead of using traditional ear loops you can attach tie-able strings at the top and on the bottom corners. These can be comfortably tied around the head to fit without requiring ears or getting in the way of your bone anchored hearing device.

Attach buttons to a headband

If you happen to have a traditional medical mask — especially if you’re a healthcare worker — then altering a scarf, bandanna, or other adaptable headband to add buttons on either side of your head is a good workaround. You can then put the loops around the buttons in place of ears.

 

 

 

 

Use a paperclip

This is a clever and simple trick: take a paperclip, slide it around each ear loop on the mask to connect them in back, then put the mask on over your head and adjust comfortably.

 

 

 

 

Do you have any other DIY suggestions for making face masks wearable without ears? Please share in the comments!

We’d like to thank our friend Melissa Tumblin and Ear Community for allowing us to share these helpful tips and photo examples.

*Masks featured in this post are not N95-rated or surgical grade.

Artist, Priscila Soares, uses imagery to advocate for the hearing loss community and adds new artwork to the Oticon Medical U.S. office

Priscila Soares creates works of art that tell the stories of real people behind hearing loss. After losing her hearing on both sides when she was young and advocating for her son, she began creating art that empowers and advocates for the hearing loss community.

Advocacy through art
Priscila is a hard of hearing artist and mother of three living in California whose hearing loss journey began when she was 17 years old. After undergoing surgery to remove a Cholesteatoma, a destructive skin growth that develops in the middle ear, problems with the surgery rendered her deaf in her right ear. At 24 years old, her left ear showed the same Cholesteatoma condition. She underwent surgery again which was successful, however, they discovered the bones had already been corroded resulting in hearing loss on her left side.

It wasn’t until her second son, Jason, was born with a moderate to severe hearing loss that Priscila began meeting other people within the hearing loss community at his preschool for deaf and hard of hearing children. It was within this environment that she met others with Bone Anchored Hearing Systems.

“I wanted to get the best quality of sound I could. It was hard to participate in group conversations. I couldn’t keep up with what everyone was saying, and I was trying to put together the missing words in between,” she explains. Priscila was bilaterally implanted with the Ponto Bone Anchored Hearing System four years ago.

“Ally Is Looking Out for Microtia”

Hearing loss portrayed through art
As Priscila became more involved in the hearing loss community, she was inspired by the people she encountered and the knowledge she was learning and sharing. This led her to combine her two passions, hearing loss and art. Primarily using acrylic paints, dry pastels, and homemade clay she began to document her own journey – My Luckyears.

“It was two years ago that I decided to take my art seriously and my Ponto was a part of that. As I’ve felt more confident in my hearing, I’ve had the courage to pursue things I didn’t think were possible.”

This year, in recognition of National Microtia Awareness Day, Priscila created an art piece called “Ally is Looking Out for Microtia” – inspired by Ear Community Founder Melissa Tumblin’s daughter, Ally.

“The piece ‘Ally is Looking out for Microtia’ is part of a series of pieces I’ve been creating based on real children with hearing loss. I first created the piece because I wanted to honor all children with microtia and atresia. I added the butterfly to land on the Ponto, for good luck.

Different from my more personal paintings and sculptures, these sculptures are not about me and my personal journey, rather I just become the catalyst of what connects the child’s journey to the rest of the world. I like to portray children because those are the foundational years of a person’s life and I want them to feel empowered!” she says.

A new addition to the Oticon Medical U.S. office
Priscila’s work revolves around acceptance and helping those with hearing loss overcome hardships which is why we are proud to now have “Ally is Looking Out for Microtia” displayed at our U.S. headquarters.

“My most powerful way of sharing what I have learned for those starting their journey is through art. I hope this piece at the Oticon Medical U.S. office will be a reminder and an inspiration to look out for each other, advocate, and not be afraid to be who you truly are.”

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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 here: User Stories

 

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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“I kindly demanded an upgrade” – How Jillian, Hazel’s mother, advocated for Hazel to get a Ponto 3 SuperPower

Hazel Shelton was born with bilateral Microtia and moderate mixed hearing loss. She was unaided until she was 18 months and adopted by the Shelton family. After trying a number of hearing devices and experiencing issues with feedback, her mother Jillian decided to conduct her own research and become an advocate for her daughter.

She began speaking to other bone anchored hearing system users online and in a number of Facebook groups which is where she learned about the Ponto 3 SuperPower.

“I watched a video of a daughter laying in her mother’s arms wearing the Ponto and there was no feedback. I started to look in the Facebook groups and hands down, Ponto won.”

Jillian traveled to California to attend the Earicles Los Angeles Microtia Atresia conference to take her research further. After meeting with a number of doctors and experts, she returned home and “kindly demanded” an upgrade for her daughter.

Hazel has now been using her Ponto 3 SuperPower on a softband for two weeks. In the video below, Jillian demonstrates just how big of a difference her Ponto is making in her life.

“My daughter’s sentences have exploded. Not just one or two words but sentences and she’s only had them on for two weeks! The feedback is not there – when she gives me a hug, sits in her car seat, or wears her hair down. She grabs the Ponto first thing in the morning and wears it until she falls asleep at night. Hands down, Ponto is the way to go.”

If you’d like to learn more about how the Ponto 3 SuperPower 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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A ‘super’ day for Kavya Sharma thanks to Ear Community and Oticon Medical donation

Kavya Sharma is almost two years old and lives in New Delhi, India. She had a difficult start in life, being born with bilateral Microtia and Atresia as well as Hemifacial Microsomia and a hole in her heart. These conditions brought her to the hospital often for feeding tubes and oxygen therapy. Today, Kavya has recovered from many of her health related issues, except one – her ability to hear.

In the Spring of 2017, her mother Savita Sharma, reached out to Ear Community looking for help. With bilateral Microtia and Atresia, Kavya struggled with speech development and couldn’t hear her parents. They worried about her ability to make friends and how she would be able to learn and attend school. After consulting with a specialist in New Delhi, it was suggested that a bone conduction device could be the answer.

On June 5, 2017, Kavya received two brand new Ponto 3 SuperPowers from Oticon Medical that were donated through the Ear Community. With the help and donated time of Dr. Niraj Kumar at the AIMS hospital in Safdarjung, Delhi, India Kavya was fitted and now has the auditory tools she needs to move forward.

“This precious little girl has already struggled to get to where she is, and we are thrilled to be able to help her on her journey.” – Melissa Tumblin, Founder of Ear Community.

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Are you interested in learning more about the Ponto 3 SuperPower for yourself or your child? Click below to be connected to a representative from our team.Learn more

‘We wanted the very best’ – a parent’s perspective on choosing the Ponto Bone Anchored Hearing System

Zhou Yu (“Z”) was born with bilateral microtia and atresia. While living in China he was unaided until he was adopted almost 2 years ago by the Bullock family. His mother Erin began doing research regarding what the best hearing care options would be for Z, knowing he would have progress to make not only learning a new language but hearing for the first time.

“It was not a hard decision to make once we did all the research. The stories that adults and older children were telling were the stories we needed to here. When we demoed products, he even could tell the difference and he picked Ponto” – Erin

In the video below, Erin explains why her family chose Ponto and the difference it is making in her son Z’s life.

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

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