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.