Tag Archives: Atresia

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.

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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The Ponto 3 Power Makes a Powerful Difference in Nicaragua

Nicaragua is the largest country in Central America with a population of over 6 million people. According to the Carlyle Hearing Center, it is estimated that 10% of the Nicaraguan population has a severe to profound hearing loss, pointing to a count of 600,000 people.

Sherry Rauh is a former medical journalist. After becoming intrigued by implantable hearing technology, she went back to school and to earn her AuD from Nova Southeastern University in 2015. She is now a clinical audiologist with South Florida ENT Associates and the co-founder of Hear for Good, Inc., a nonprofit foundation dedicated to helping adults and children with hearing loss in South Florida and Nicaragua.

Hearing Aids for Nicaraguan Students (HANS)

Kamilla, age 7

In 2014, Dr. Rauh organized a joint project between Nova Southeastern University’s (NSU) Student Academy of Audiology and the Los Pipitos Institute in Managua, Nicaragua to provide hearing aids to children.

“I had been to Nicaragua the previous year and saw how they were identifying many children with hearing loss at a young age, but had limited resources for intervention.”

In 2015, the HANS Project received a grant from the Hear the World Foundation providing BTE hearing aids for the next 5 years. Dr. Rauh now travels to Nicaragua every year with a small group of audiology students from NSU, to fit new hearing aid devices and provide followup to previous patients, while Los Pipitos provides check-ups and speech therapy.

“It’s really important to me that whichever children we do fit with hearing aids we are able to provide them with sufficient follow-up care.”

Providing Bone Conduction Hearing Devices in Nicaragua

Anselyn, age 1

As Dr. Rauh’s organization has grown, her partners in Nicaragua began asking what could be done for children with microtia and atresia, who cannot use conventional hearing aids for their hearing loss. She reached out to Oticon Medical and her local representative, Brittany Whitlock, who provided two demo units which were fit with soft-bands. Oticon Medical then made an official donation of four Ponto 3 Power units for her trip her most recent trip this October.

“While we have the BTE hearing aids, there are children who can’t use those and to be able to extend assistance to those children meant a lot to our team, the team in Nicaragua, and the families.”

Frander, age 7 months

 

With the continued work of the Hear for Good foundation and Los Pipitos, children in Nicaragua with different hearing needs are not only being fit with hearing devices, but receiving the proper follow-up, and care throughout their lives. When asked why this work is important to her, Dr. Rauh said, “There are so many countries where there is very little, to no access to audiologists, so part of me feels like we have a responsibility to provide that assistance. But I also get a lot of personal joy making these trips and seeing the difference we are making.”

 

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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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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2017 Ear Community Microtia and Atresia Summer Family Picnics

It’s that time of year again when the weather gets warmer and we start making our summer plans! We’re thrilled to once again be sponsors and participants in the Ear Community’s Microtia and Atresia Summer Family Picnics.

Every year, Ear Community hosts picnics all around the world helping bring Microtia and Atresia families together to share experiences and make new friends. Medical professionals such as Microtia and Atresia repair surgeons, anaplastologists, ENT’s, audiologists, and therapists along with hearing device companies all come together at the events to educate and inform attendees of their options. The picnics are free and provide lunch and family friendly activities.

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This year’s picnics will take place in the following locations around the U.S.:

Maryland Ear Community Picnic
Annapolis, Maryland
Date:  Saturday June 10th, 2017
Time:  11AM to 3PM
RSVP to Heidi at:  [email protected]

Texas Ear Community Picnic
Austin, Texas
Date:  Saturday, June 10th, 2017
Time:  11AM to 3PM
RSVP to Heidi at:  [email protected]

Colorado Ear Community Picnic
Broomfield, Colorado
Date:  Saturday June 24th, 2017
Time:  11AM to 3PM
RSVP to Melissa at:  [email protected]

New York Ear Community Picnic
Ardsley, New York
Date:  Saturday, July 22nd, 2017
Time:  11AM to 3PM
RSVP to Heidi at:  [email protected]

Florida Ear Community Picnic
Fort Pierce, Florida
Date:  Saturday, July 22nd, 2017
Time:  11AM to 3PM
RSVP to Heidi at:  [email protected]

Tennessee Ear Community Picnic
Nashville, Tennessee
Date:  Saturday, July 22nd, 2017
Time:  1PM to 5PM
RSVP to Melissa at:  [email protected]

We look forward to seeing you there!

“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!