Tag Archives: children with hearing loss

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

Tammy 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.

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.

Upon 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.

Hearing The Call In Malawi

Bridging Continents Through Sound

Earlier this year, Oticon Medical Marketing Manager and audiologist, Hilary McManus, had the opportunity to travel to Malawi with Hearing the Call, a nonprofit organization that focuses not on short-term relief, but on the long-term development of sustainable hearing healthcare in the communities it serves. Rather than providing one-time care and moving on, Hearing the Call collaborates with local professionals to build lasting systems through education, training, and access to resources.

This model of development over relief is backed by growing global health research. Short-term missions can sometimes unintentionally undermine local providers, disrupt continuity of care, and create dependency. Sustainable development, on the other hand, strengthens local infrastructure, empowers communities, and ensures that care continues long after international teams depart.^1.2.3.4.

In Malawi, Hilary saw firsthand the vital role local providers play in ensuring that care is both sustainable and culturally responsive. These providers bring invaluable insights into their communities, enhancing the quality and relevance of the care delivered.

During three clinical days, Hilary’s group saw 174 patients, which included 113 traditional hearing aid fittings and eight Ponto™ fittings. They were also able to provide training to local audiologists and audiology students to ensure these patients receive top-tier follow-up care.

It was a whirlwind of activity, but what stood out most was the collaboration with dedicated Malawian clinicians and students, whose commitment to their patients and profession is nothing short of inspiring. Hilary’s group tried to see as many patients as possible while still providing excellent care. Even in this fast-paced environment, every individual on the team was able to not only teach, but learn from clinicians, students, and patients.

One of the audiologists on the trip asked everyone to think of one word to describe their time in Malawi and the first word that popped into Hilary’s mind was laughter. “Of course, we all worked hard giving those who attended the outreach clinics the best possible care,” Hilary shared. “But what I remember most are the moments of shared laughter between team members, with patients, and with my Malawian colleagues. It was the kind of laughter that supersedes language barriers, eases the weight of long days, and reminds you why you chose this profession in the first place.”

Despite the high prevalence of otitis media (an infection of the middle ear) and associated hearing loss, few Malawians have ever received a hearing device. Misconceptions about hearing loss and ear infections, combined with limited access to care with widespread use of home remedies, highlight critical gaps in hearing health literacy and service delivery. Bone anchored hearing systems like Ponto are uniquely suited to these communities, where conductive hearing loss and middle ear conditions are extremely common.

A Note from Yamikani Dumbo, Local Malawi Audiologist

Malawi faces significant challenges in addressing hearing loss due to limited resources. There is only one institution offering an Audiology degree, making it difficult for aspiring audiologists to access education and training. Consequently, the country lacks sufficient audiologists to provide essential services. Those who do qualify often seek job opportunities abroad, leaving Malawi with a severe shortage of skilled professionals.

Although four government hospitals offer audiology services, access to care remains insufficient due to limited equipment and resources. Furthermore, the absence of hearing aids at these hospitals limits the effectiveness of hearing loss diagnoses. This lack of services and essential tools deepens the problem, leaving many individuals without access to the care they need.

The state of audiology in Malawi is concerning and requires attention. There is a need to raise awareness through educating the public about the importance of ear health and the consequences of untreated hearing loss. Increasing accessibility in audiology education and training opportunities to increase the number of skilled professionals is needed to minimize challenges in accessing care. It is also essential to improve local audiology services by providing appropriate equipment and resources so they can offer comprehensive care.

Resources and Special Thanks

Hearing the Call was founded in 2016 to address the needs of thousands of individuals worldwide with treatable hearing losses who lack access to hearing aids. If you or your organization would like to support their efforts to aid hard of hearing people around the world, please visit https://hearingthecall.org/. You can also learn more about their outreach trips and volunteer opportunities.

Hilary and Oticon Medical would like to personally thank all the Hearing the Call employees and volunteers she worked with on this trip, including co-development and clinical lead Dr. Heidi Hill, co-development lead Dr. Jenna Vallario, Entheos Director of Education and Research Laurel Gregory, and photographer/videographer Cristian Veaudry.

Thanks also go out to the hearing care professionals who joined HIlary on the Malawi trip, including Dr. Sarah Conrad, Dr. Nad Kattan, and audiology student Anna Rippy and Malawian audiologists Yamikani Dumbo and Alinane Malili, Head of the Audiology Department at African Bible College (ABC), ENT physician Dr. Julia Toman and infectious disease specialist Dr. Zach Porterfield.

Most of all, we’d like to share our deep appreciation of the incredible, very soon-to-be audiologists Mphatso Dube, Enittah Chikuse, Flocy Square, Angella Banda, Peace Chikuniwenda, Micah Mbewe, Mercy Msakwiza, Cuthbert Mbalame, and Jane Iradukunda.

References

1. Chaus, M. (2020). The dark side of doing good: A qualitative study to explore perceptions of local healthcare providers regarding short-term surgical missions in Port-au-Prince, Haiti. Journal of Global Health Reports, 4, e2020002. https://doi.org/10.29392/001c.11876

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 Journal of Global Health Reports
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2. Tracey, P., Rajaratnam, E., Varughese, J., Venegas, D., Gombachika, B., Pindani, M., Ashbourne, E., & Martiniuk, A. (2022). Guidelines for short-term medical missions: Perspectives from host countries. Globalization and Health, 18(1), 19. https://doi.org/10.1186/s12992-022-00815-7

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 BioMed Central
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3. Melby, M. K., Loh, L. C., Evert, J., Prater, C., Lin, H., & Khan, O. A. (2016). Beyond medical "missions" to impact-driven short-term experiences in global health (STEGHs): Ethical principles to optimize community benefit and learner experience. Academic Medicine, 91(5), 633–638. https://doi.org/10.1097/ACM.0000000000001009

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ResearchGate
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4. Prasad, S., Aldrink, M., Compton, B., Lasker, J., Donkor, P., Weakliam, D., Rowthorn, V., Mantey, E., Martin, K., Omaswa, F., Benzian, H., Calgua-Guerra, E., Maractho, E., Agyire-Tettey, K., Crisp, N., & Balasubramaniam, R. (2022). Global health partnerships and the Brocher Declaration: Principles for ethical short-term engagements in global health. Annals of Global Health, 88(1), 31. https://doi.org/10.5334/aogh.3577

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Annals of Global Health
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Four Tips to Help Your Child Succeed in the Classroom

With the right support, children with hearing loss can still find success in school. Parents play a crucial role in this journey, often serving as their child’s biggest advocate. Whether it be fighting to ensure that their child has access to the necessary resources to achieve success or providing support for the child at home, the role of parents in their children’s academic lives is vital. In a recent discussion involving Dr. Michelle Kraskin (Weill Cornell Medicine’s Director of Audiology), Sammie Levy (an educational specialist), Kimberly Szabo (an educational audiologist), and Laurie Winter (a teacher of the Deaf and hard of hearing), they provided four essential tips regarding steps parents can take to help their child flourish both academically and socially.

Provide copies of your child’s hearing tests to the school.

When asked about how audiologists might help support their patients in educational environments, Kraskin answered, “One of the things we do at our center is provide our patients with copies of their hearing tests that they can provide to the school.” Szabo agreed with this statement, adding that while audiograms are helpful, speech and noise testing is also extremely important, as it “gives a lot of information on how [audiograms] translate into the classroom.”

Providing both tests to the school helps them understand what the baseline is for the child at that moment, rather than having to work with tests from several years ago. Winter re-enforces that while audiograms do give an idea of “the type and degree of hearing loss,” they “don’t tell how that person functions with their hearing.” This is important for teachers and educators to be aware of so they can figure out the student’s educational needs.

Meet with the school to discuss expectations regarding your child’s hearing loss.

Another thing that the experts agreed was beneficial, especially with younger students, was a conference between parents and educators. When it comes to a small child, who is often unable to fully or accurately express themself, parents understand best how they function and how to manage their hearing loss. Parents can also provide insight into the challenges and struggles their child encounters in the classroom.

Levy adds that for older children, “quality of life check-in’s” work, and that even though “the school day is 8:30 to 2:30, we want to support our patients [and empower them to] enjoy extracurricular activities, complete their homework, and engage in dinner conversations,” like their peers.

These conferences give parents an opportunity to discuss concerns with their child’s educators, and create a game plan for their students. Levy mentions that these conferences help educators develop a “school year bucket list of things that they want to accomplish or enhance at the beginning of the school year,” which can be discussed later in the year, to track growth and success.

If your child needs something to succeed, don’t be afraid to ask.

If you know that your child needs something in the classroom to succeed, whether it be an FM system, microphone like the EduMic, or something else, Winter states that it is “very helpful for the educator to have that information” so that they “have something available that is geared specifically to [the child’s] needs.” Winter notes that although this is helpful for educators and kids, she rarely hears about parents sharing this information.

The experts agree with Winter, and Kraskin adds that avoiding “wishy-washy terms, such as may benefit,” is also helpful. Rather, use definitive terms, such as “will benefit,” to avoid any “gray area or interpretation,” which frequently results in the student not getting the proper accommodations they require.

Levy continues by giving the example, “We know that X, Y, and Z would be very beneficial for the student because…” The experts agree that this statement reduces a lot of those “gray areas” that may have been left up to interpretation. This avoids the need to leave things up to the discretion of teachers or administrators, who may be completely unfamiliar with working with hard of hearing students, as well as help break down the “lack of willingness to give all the accommodations.”

Empower yourself with information.

“You don’t know what you don’t know,” Kraskin says. Believing that one of the most important things is empowering the parent with information, Kraskin adds, “A lot of the parents do not know what their rights are, what kind of care and accommodations their child should be receiving, or what the law is.” Whether parents learn from clinicians and audiologists, other families who have already dealt with the same issues, or other trustworthy resources, it is essential that they are aware of what their children are entitled to and how to fight for it.

Winter agrees, stating that from her experience, “parents do not know what their rights are, what’s out there for their children, or what schools can provide.”

Supporting children with hearing loss requires a combination of efforts from parents, educators, and hearing care professionals working together. By keeping these tips in mind, parents can help ensure that they have all the tools and confidence to fully engage in their education and reach their full potential.

Want to learn more? Find the whole discussion on Audiology Online!

Supporting Students with Ponto: A Comprehensive Overview for Teachers

The Impact of Sound on Student Learning

Whether it be the ringing of the bell, the sharpening of a pencil, or the voice of an instructor, every sound in a school environment plays a key role in not only facilitating learning processes but establishing a rhythm of daily activities. Without sound, it is difficult to foster a conducive environment for students and educators alike.

Some students may have conductive/mixed hearing losses or single-sided deafness (SSD). Conductive or mixed hearing loss are the result of issues present in the middle or outer ear. These may include ear infections, problems with the middle ear bones, or malformations of the outer ear or ear canal, such as microtia and atresia. In the case of SSD, the student has one completely non-functional ear, while the other may have reduced or normal hearing.

Having access to sound is a critical element of a child’s success in regular classroom environments. Some students with hearing challenges may have bone anchored hearing systems (BAHS) like Ponto™ to help alleviate possible difficulties keeping up with lessons. A BAHS is a type of hearing device that sends sounds directly into the inner ear, using a process known as bone conduction.

A Teacher’s Quick Guide to Ponto

The Ponto System consists of two main parts: either a softband or surgically implanted abutment, and an external sound processor. The softband/abutment holds the sound processor on the head, while the processor captures sound from the wearer’s surroundings and transfers it through the skull, in the form of vibrations, to the inner ear.

For educators with young students, you should know how to change the Ponto battery, as shown below, if the battery dies during the school day.

If the sound processor falls off, position it vertically with the microphone inlets toward the bottom, aligned horizontally. If possible, avoid letting anything touching the sound processor to prevent a whistling sound known as feedback. If the student is wearing a softband, it should fit snugly but comfortably against the head. You should be able to insert two fingers between the softband and the head. The following photo shows proper softband placement.

Supporting students

In addition to supporting device functionality, there are other strategies educators can use to enhance the learning experience for their hard of hearing students, such as:

Repeating or rephrasing information when requested
Speaking slowly and clearly at a comfortable volume
Employing written instructions or visual cues
Maintaining good visibility by facing the child
Avoiding face or mouth coverage, and ensuring adequate lighting in the classroom
Enhancing classroom acoustics by:
- Closing doors
- Placing tennis balls on furniture legs
- Using carpets and wall coverings for sound absorption
- Positioning desks away from noise sources
Adhering to guidelines in the student’s Individualized Education Plan (IEP) or 504 plan, if applicable
Using an EduMic or similar microphone

Using the EduMic in the Classroom

The EduMic is an extremely helpful accessory that provides Ponto users with an even better experience with their BAHS. It serves as a bridge system providing wearers with microphone, FM, audio jack, and telecoil modes. Microphone Mode is a powerful tool, carrying the teacher’s voice directly into the student’s Ponto, reducing background noise interference between the student and teacher.

To achieve the best results in Microphone Mode, clip the EduMic a maximum distance of eight inches away from the speaker’s mouth. Take care to avoid scratching noises and jewelry clinking against the microphone, as these sounds will also be relayed directly to the student. In order to use FM mode or take advantage of the audio jack mode, insert either the auxiliary cord or the FM connector to the bottom of the EduMic.

For full EduMic instructions, click here.

Set Your Students with Bone Conduction Hearing Devices Up for Success

Supporting students with hearing loss, particularly those using a BAHS like Ponto, requires a combination of technical knowledge and well-planned classroom strategies. By understanding the functionality of the Ponto System, educators can ensure that students are able to not only access sound effectively, but also engage fully in classroom activities. Teachers play a critical role in fostering a supportive and inclusive atmosphere, empowering students with hearing challenges to reach their full potential.

How Advocacy Led Emma Kate’s Family to the Right Hearing Loss Treatment

Longtime Oticon Medical advocates Georgene and Lucy Brown befriended Liz and Emma Kate Greene, which led to Emma Kate getting a Ponto™ bone anchored hearing system (BAHS) to treat her single-sided deafness (SSD). Now Liz shares her family’s journey toward finding the right solution and the vital roles Georgene and Lucy played in making their decision.

Emma Kate has single-sided deafness due to conductive hearing loss. This is secondary to otosclerosis, which was first diagnosed in kindergarten, but we suspect occurred in 4K as we had quite a bit of difficulty that year following directions. Her teachers actually thought she was autistic because she had difficulty interacting at school, but we had no difficulty at home. We suspect this was because there was less background noise and because her dad and I both have strong (loud) voices.

She initially used a behind-the-ear regular hearing aid. She told us that this did not improve her hearing almost at all and we had a lot of difficulty getting her to wear the device. She also had difficulty being active as her device would frequently fall off and get lost.

Discovering bone conduction as a treatment option

We were first introduced to the idea of a bone anchored hearing device by our ENT when Emma Kate was 10 but he told us this wouldn’t be an option until she was older for implant. He did not offer the option of wearing a device on a softband. He also dealt exclusively with another manufacturer and therefore Ponto was not offered as an option. Once we were introduced to the idea of bone anchored devices, I did a lot of research into available devices along with the pros and cons of each, which lead us to a new ENT who was able to work with Oticon Medical devices.

As part of my research, I joined several social media groups geared towards bone anchored devices for both adults and children. In asking questions in these groups I was frequently referred to Georgene Brown, as our daughters are close in age and both active. She was incredibly friendly and informative when I reached out and has always been willing to spend time discussing her vast knowledge regarding bone anchored devices.

I think that all preteens, especially preteen girls, want to feel like they fit in. Any difference is upsetting, particularly when you feel that you’re the only one dealing with an issue. Emma Kate’s friendship with Lucy Brown has helped her feel that someone else understands the challenges that she has from being hearing impaired and also the fears that come with requiring surgery, how to fit in at school, etc. It has been incredibly beneficial to Emma Kate to be able to talk to someone who has lived through these experiences and is thriving despite hearing loss.

The next step: minimally invasive implantation surgery

Emma Kate’s abutment placement was incredibly smooth. We had a same-day procedure. She recovered from anesthesia without difficulty and was playing her guitar about two hours after we left the hospital. We had no difficulty with healing or infections. We were able to activate her Ponto about six weeks after her procedure. The most difficult part was not using her Ponto during that time at school.

Emma Kate says that since having her abutment implanted, she can hear better and that it is much more comfortable to wear her Ponto as opposed to when she was wearing the softband.* She also states that she was embarrassed for people to see the softband but feels that her Ponto is now much more discreet. She is able to be active without her Ponto moving but states that her softband would slip out of place sometimes when moving between classes at school.

The benefits of Ponto 5 Mini

Now, having the new Ponto 5 Mini makes Emma Kate’s life even easier. We first noticed an improvement when Emma Kate began wearing a Ponto on a softband However, the benefits have increased since her MIPS procedure. At home, she is able to engage more at dinner or in conversations.

At school, Emma Kate uses an EduMic™ to stream her teachers’ voices directly to her Ponto. Particularly in middle school where she has multiple teachers, some of whom are very soft-spoken or teach from the back of the room, this has been incredibly helpful. Again, this is particularly helpful during the pandemic, as many teachers are wearing masks. We have seen an improvement in her grades from consistent B’s and C’s to A’s and B’s.

She also has found significant improvement in everyday activities. She loves to play guitar and listen to music. Her Ponto has significantly improved her ability to follow music while playing her guitar and to watch TV or listen to music without the whole house hearing what she’s watching. She loves the ability to stream music directly to her Ponto, especially on road trips.

Emma Kate would say her greatest improvement is socially. She is much more confident engaging in conversations since she is not frequently having to ask her friends to repeat themselves. And this is particularly helpful in settings with background noise, such as restaurants, parties, and the cafeteria at school.

The Ponto 5 Mini’s small size, as well as the lack of feedback (due to the OpenSound Optimizer™ feature) when worn under her thick, long hair were both critical in our decision-making when comparing devices initially. She also uses the Bluetooth® capability almost daily. We have not yet used a remote appointment (via the RemoteCare™ feature) with our audiologist but have discussed that this is possible in the future.

What parents considering a BAHS for their child should know

I want someone considering getting a bone anchored hearing device to know that there are options. Frequently, only one popular brand’s products are presented but there are other companies, such as Oticon Medical, that have incredible products as well as unparalleled support. When I initially reached out to Oticon Medical to get information prior to deciding to pursue a Ponto, I was immediately connected with a local representative who was present at Emma Kate‘s activation appointment and has been invaluable throughout this process. She is constantly willing to help me adjust settings as well as obtain necessities, such as an extra case or support for school.

I would also want them to know that there may be insurance challenges. However, our ENT and Oticon Medical have been incredibly helpful in working through these.

Lastly, and perhaps most importantly, I want them to know that they are not alone. There are multiple support groups available online through social media that can help connect to other parents as well as young adult and adult patients who are using bone anchored hearing devices in their everyday lives. These individuals are always more than willing and gracious to answer questions, provide experiences, and to just listen to the frustrations and fears that unavoidably come with having a child with hearing loss. We have found this community, particularly Georgene and her family, to be our biggest cheerleaders through this process. They have helped alleviate Emma Kate’s fears, as well as our concerns, while having our daughter go through a surgical procedure, healing, and ultimately making life-changing decisions. We are so thankful we found Oticon Medical because even in the short time that we have been using Emma Kate’s Ponto we have seen vast benefits.

Ready to try a Ponto bone anchored hearing system? Find a clinic near you!

* NOTE: Implantation is contraindicated for children below the age of 5 years.

Ask the Expert Series

Audiologist Laura Rhee’s Insights on Fitting Children with Ponto Systems

We had the wonderful pleasure of talking with lead pediatric audiologist, Dr. Laura Rhee from Providence Speech and Hearing Center and CHOC of California, about her experience fitting Oticon Medical Ponto Systems.

Why do you choose to work with Oticon Medical’s Ponto family of bone conduction devices?

Dr. Rhee: “I recommend Oticon Medical bone conduction devices over other manufacturers because your devices tend to have far less feedback issues. I make very few adjustments during the fitting due to the lack of feedback. This gives my patients more access to sound without the annoyance of feedback or reduction in speech understanding.”

What do you like about the Oticon Medical Ponto fittings?

Dr. Rhee: “I really like how easy the Ponto devices are to fit. Typically, I don’t have to make many adjustments to programming. At my clinic, we pre-program sound processors to make fittings go smoothly. We counsel families about daily use, how to clean and handle the sound processor and accessories during a demonstration or consultation appointment. Pre-programming the sound processors frees up time for us to spend counseling the families, improving our clinical efficiency, and providing valuable information to the family without being rushed.”

What are some challenges you or your patients face with Oticon Medical Ponto fittings?

Dr. Rhee: “The hardest part of a new fitting is the softband. It’s important to have it (the softband) tight enough to get a good fitting but this can become uncomfortable or may need to be adjusted throughout the day. Very young children will often grab and pull the band off throughout the day requiring parents or caregivers to replace and reposition often I tell parents it’s important to maintain a consistent wearing schedule each day because it will help children adapt to the softband and provide consistent access to sound, which is crucial for developing language”.

What advice do you give parents that are just starting this journey with their child?

Dr. Rhee: “Use the processor all waking hours to stimulate auditory connections within the brain. If you don’t use the auditory nerve or pathway, your brain will reuse those neural connections for other senses. Keep your brain working using the processor consistently to help reduce listening fatigue and foster speech development.”

Final thoughts on reducing feedback in bone conduction hearing devices

One of the key takeaways from our discussion was the importance of reducing feedback (aka ‘whistling’ or ‘whining’ noise) that occurs when amplified sound is reflected from the head, reaches the microphone, and is re-amplified. If feedback is not eliminated by an anti-feedback system, it becomes audible to the user and others around them. With Oticon Medical’s OpenSound Optimizer™ (OSO), you aren’t compromising gain or volume due to feedback. This is especially important when working with pediatric patients, who are often in a car seat, highchair, or lying on their backs during playtime. And Oticon Medical’s OpenSound Optimizer does just that—prevents feedback and provides stable gain so that users can get the most out of their devices without compromising speech understanding.^[1]

Helpful links for parents of Ponto wearers

Here are some links that may be helpful for parents who are in the process of getting their child an Oticon Medical bone anchored hearing system (BAHS) or families of children that are new to wearing a Ponto BAHS processor.

About our expert: Dr. Laura Rhee

Dr. Rhee obtained her audiology degree from San Diego State University and University of California San Diego and has been at Providence since 2014. She works with a wide variety of pediatric patients (zero to 21), including children with craniofacial disorders. She has treated children with atresia, Treacher Collins and other syndromes related to hearing loss.

[1] BC109 Study (Data on file)

Miss Lucy Brown — Still Tumbling with Ponto 4!

Our favorite Ponto 4-wearing gymnast, Lucy Brown, is able to hear clearly despite the hustle and bustle surrounding her. Check out her moves in this short video, provided courtesy of her proud mom, Georgene Brown:

Hearing in noise is one of the most difficult challenges people with hearing loss face. Whether its other people’s conversations, background music, or other ambient noise, the strain to hear what you actually want to listen to all day can be frustrating and exhausting. As a competitive gymnast, Lucy cannot afford to let either get in her way. Fortunately, thanks to her Ponto 4 bone anchored hearing system, she is able to focus on her coach’s important directions and executing her challenging gymnastic routines.

Go, Lucy Brown, indeed!

The Ponto 3 SuperPower spurs a 180 degree change for Amelia

Allison Richardson’s three-year-old daughter, Amelia, was born with Auditory Neuropathy Spectrum Disorder and has severe-profound unilateral hearing loss. At the time of Amelia’s diagnosis, family members and doctors advised her not to worry. But with three of Amelia’s older brothers diagnosed with Apraxia, a speech sound disorder, Allison knew the importance speech and hearing was to development.

While pregnant in 2009 with one of her sons, Allison began joining groups on Facebook for parents. She found these to be supportive networks where she could turn to for help and develop friendships. Once Amelia was born, she set out to find a Facebook group for parents of children with hearing loss, which is where she found the “BAHA Kids Club” Facebook group.

After learning about bone-anchored hearing systems (BAHS) and doing her own research, Allison brought Amelia to her ENT’s office to inquire about a BAHS. After learning the pros and cons of different devices, the personal stories of parents online, and about feedback and Oticon Medical’s great customer service, they advocated for a year-and-a-half to secure a device for Amelia.

180 degree difference with Ponto

Life for Amelia changed after being fit with the Oticon Medical Ponto 3 SuperPower. “She went from being an unfocused child speaking no more than five words to a focused student and dancer who now talks more than anyone at home. Her five older brothers say that Amelia has a bionic ear,” Allison said.

Amelia currently attends preschool and sits in a classroom with special needs and non-special needs students. The mix, Allison noted, provides special needs kids with mentors, and teaches non-special needs kids acceptance.

Advice for parents

Allison’s advice is simple when it comes to making a medical decision for your child: “Go with your gut and don’t compare kids”.

She continued, “Do what you think is best for your child, not what other people say is best, because you know your child.”

The journey to better hearing and finding the right hearing device for your child’s individual hearing loss can be long and sometimes feel like a never-ending waiting game. Continue to advocate for yourself and your child, reach out to online support groups, try all your options, and as Allison reminded us, “Don’t give up.”

Find a clinic

Click the button if you want to learn more about our Ponto bone anchored hearing systems or arrange a trial.

Ear Community goes to Washington with Ponto SuperPowers

Advocacy Day 2019

On February 26, Ear Community was invited to be a part of the 2019 Advocacy Day on Capitol Hill. This annual event invites advocates on behalf of dental, oral, and craniofacial research to speak directly with federal policymakers about how insurance coverage and research funding would improve the lives of those living with these conditions.

Organizer Melissa Tumblin founded Ear Community and has a daughter, Ally, with Microtia and Atresia who wears a bone-anchored hearing system (BAHS). Melissa was able to arrange the meetings with House and Senate representatives because she sits on the Patient Advocacy Council for the National Institute of Dental and Craniofacial Research (NIDCR).

Melissa and Ally were accompanied by eight other Ear Community families, including one medical doctor, to Washington, D.C. representing the states of Washington, Colorado, Tennessee, Maryland, and Virginia.

Lobbying on behalf of families living with hearing loss and related conditions

On Monday, February 25, Melissa met with directors from the National Institute of Health representing the NIDCR, American Association for Dental Research (AADR), and International Association for Dental Research (IADR) to discuss collaborative efforts regarding children and adults affected by craniofacial challenges due to Microtia and Atresia and Goldenhar Syndrome.

The next day, the Ear Community families met with the following representatives and staff members on Capitol Hill:

Staff members for Senator Lamar Alexander’s (R-TN) office
Legislative staff members for Congressman Joe Neguse’s (D-CO), Senator Cory Gardner’s (R-CO), and Michael Bennet’s (D-CO) offices.
Legislative staff members for Senator Chris Van Hollen (D-MD), and office staff for Congressman John Sarbanes’ (D-MD) and Senator Ben Cardin’s (D-MD).
Legislative staff and the press secretary for Congressman Denny Heck’s (D-WA) office and an Appropriations representative for the NIH staff for Senator Patty Murray’s (D-WA) office.
Senator Tim Kaine (D-VA), Congresswoman Abigail Spanberger (D-VA), and legislative staff members for Senator Mark Warner (D-VA) and Congressman Ben Cline (R-VA). Sen. Kaine was celebrating his birthday and signed a little girl with Microtia and Atresia named Mazie’s cast. Both Sen. Kaine and Rep. Spanberger tweeted about the Ear Community visit.

Melissa also scheduled phone meetings with Congressman David McKinley (R-WV) and Congressman Michael Thompson (D-CA), as they both serve as co-chairs of the Congressional Hearing Health Caucus. Rep. McKinley is a cochlear implant user, and his grandson wears a bone-anchored hearing aid.

Each family left behind a detailed packet of information with the story of the Ear Community organization, an explanation about the need to wear bone-anchored hearing systems, and a sample of anaudiogram along with other helpful facts and figures. Each family explained to legislators and their staff that a bone-anchored device is their only option, because they don’t have the same hearing challenges that qualify others to wear cochlear implants or benefit from traditional hearing aids. Therefore, wearers need lawmakers to work toward mandating bone-conduction hearing device coverage by insurers nationwide. Otherwise, insurance companies are effectively discriminating against thousands of children and adults with hearing loss by not covering these medical devices.

A Stranger Things star gives back

The Ear Community families also received an exciting treat: thanks to the NIDCR and AADR, they were given the opportunity to meet actor Gaten Matarazzo from the hit TV show Stranger Things! He was part of the Advocacy Day non-profit organization lobbying to bring awareness to Cleidocranial dysplasia (CCD), a rare genetic mutation affecting the growth and development of teeth and bones.

Melissa expressed her appreciation to Oticon Medical for lending her two Ponto 3 SuperPower BAHS on soft bands. During her visits, representatives tried on the Pontos and listened to her talk during their meetings, so they could experience for themselves what it’s like to hear through bone-anchored devices.

Ear Community hosts a series of picnics where Microtia and Atresia families can learn more about Oticon Medical’s Ponto 3 SuperPower. Please click through this link for the 2019 picnic schedule.

Ready to try your first Ponto BAHS or upgrade to our latest model? Click below to get in touch with an audiologist in your area who can help you choose the best option for your hearing needs.

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SuperNOVA receives super hearing from her Ponto 3 SuperPowers

Pfeiffer Syndrome is a craniofacial disorder that affects one in every 100,000 people and impacts the way bones grow. Nine-year-old Nova Cox was born with Pfeiffer Syndrome, and in her case her head, neck, and arms have been affected resulting in hearing loss in both ears.

Because hearing loss is common with Pfeiffer Syndrome, her parents Elizabeth (Liz) and Jason connected with other families, utilized Facebook groups for bone conduction wearers, researched online, and consulted their audiologist before Nova was fit with a bone-anchored hearing system (BAHS) on a softband.

That’s a new sound

After wearing a bone-anchored hearing device on a softband for 7.5 years, Nova began advocating for abutment surgery. After doing research with her family, they consulted an audiologist and were able to try on different types of BAHS before her surgery.

“Nova made the decision to have the implant surgery and was able to ask her questions and be a part of the decision-making process. When she learned more about it she advocated for it and we moved forward when she was ready. When she tried on the Ponto, she didn’t want to take it off,” Liz explained.

Nova chose the Ponto bone-anchored hearing system because she experienced less feedback and better sound quality after trying different devices. She had bilateral abutment surgery and was fit with two Ponto 3 SuperPowers. On the day her Pontos were programmed it was raining and her mom recalls she asked, “Does the rain always sound like this?”. Nova’s parents knew they had made the right decision and for the first few weeks of having her Pontos on abutments they liked to play a game called That’s a new sound, where Nova shared new sounds she was experiencing.

Life with Ponto

It’s been a year since Nova’s bilateral abutment surgery. Today, she is a fierce and mighty force of nature advocating for herself, her health, and her life as an active kid.

She says she loves her Ponto BAHS and enjoys using the Oticon Medical Streamer in class and when she’s in the hospital so she can watch movies to pass the time. And like lots of kids her age she likes Legos, Star Wars and Pokemon and spends her free time playing music, soccer, Taekwondo, and watching movies with friends.

Nova hiking

Empowered to tell her story

Inspired to share her story especially with young children, Nova created the video below as she was preparing to give a talk in Washington, DC advocating for high-quality accessible healthcare for children.

Advice to others

Nova and her family have learned a lot in just nine years. A few important pieces of advice that they want to share with other families is to try multiple hearing devices in order to find the right solution and make decisions when the time is right for you or your child. As for Nova, she has the best advice — “Judge Less, Love More”.

Find a clinic

Click the button if you want to learn more about our Ponto bone anchored hearing systems or arrange a trial.