Born with microtia and anotia
“Microtia is defined as a malformed structure of the ear, and anotia is the absence of any form of the ear,” Justin explains. “I don’t have any outer ear structure on the right side, but I do have a small, kidney bean-sized structure where my ear would have formed. On the left side where I have a partial ear, about half the size of a normal ear, almost all of the outer ear structure is there. However, the middle ear bones don’t function as they should do, and therefore, sounds are not transmitted to the inner ear as they should be.”
Diagnosed with microtia/atresia and anotia at birth, Justin was a toddler before his bilateral hearing loss was treated. He had begun speaking a few words, but his parents realised that he was not responding to everyday sounds. A hearing check confirmed his hearing loss. Over the next few years, Justin underwent several reconstructions of his left middle ear. When the reconstructions failed to separate the delicate middle ear bones, Justin was fitted for one of the original bone conduction solutions.
“I was fitted with an external bone conduction device that looked like a hard, plastic headband, similar to the kind that girls use to hold their hair back,” he said. “I wore that for 22 years!”
Justin admits that as a child, it was often difficult to cope with the stares and many questions that his unique head gear generated. “As I grew older, I realised that people are just naturally curious. I became more comfortable starting a conversation and sharing information about my situation,” he says. “Today, I use that early experience to advocate for others and to help raise awareness of the opportunities and choices that are available today, many of which weren’t available when I was a child.”
“I got the help that I needed to succeed”
Justin reports that his ability to advocate for himself and others was nurtured by his parents from an early age. “My mum is a teacher, and she made sure that my teachers knew about and understood my condition,” he says. “Through her advocacy, I got the help that I needed to succeed.” And Justin did indeed succeed. He was mainstreamed throughout his primary and secondary school years and earned a Bachelor’s degree in Sports Management from Otterbein University. While at Otterbein, Justin was recruited for a top spot on the university’s varsity tennis team and helped to lead the team to a conference championship.
Unaware of other options
Life with his bone conducting band did not always go smoothly. Justin can still feel the ridges in his skull caused by the pressure created by the headband. Frequent repairs. He learned to have back-ups of his older devices to get by during the many times his newer device was in for repairs.
Until he was 22 years old, Justin persevered with the headband, unaware that advances in bone anchored technology might provide a better solution for him. “There was so little information out there for people in my situation,” he says. “I never knew there were other options available.”
His first bone anchored hearing solution provided improved sound clarity and freedom from his headband. However, it was an analogue device, so it did not automatically adjust changes in his sound environment. “I had to learn how to control the sound level using the device’s volume control,” he says.
On occasion, the sound processor would pop off the abutment and break on the ground. Over the next few years, Justin repaired, patched or replaced his processors numerous times. The final break came while Justin was teaching tennis to a young child. “He flailed his arm and hit the side of my head. My life flashed before my eyes in slow motion as I watched my processor fall to the ground and break into eight pieces,” he adds. “Everything I do in my life depends on my hearing device. Everything I do in my job is connected with my ability to speak to people on the phone. I was just out of school and didn’t make enough money to purchase a replacement. And insurance wouldn’t cover it.”
The congregation at Justin’s church generously donated money to purchase a new instrument. An otolaryngologist in the congregation also offered his services and suggested that Justin consider a new bone anchored sound processor — the Oticon Medical Ponto Pro — that had recently become available.
Family and friends noticed the difference
Justin appreciates the clarity and automatic adjustments to changing sound environments that his new digital Ponto Pro sound processor provides. He wears it comfortably throughout the day, snapping it on first thing in the morning and snapping it off before he goes to bed. Family and friends have noticed a difference in his ability to join in conversations at social gatherings — something that was a challenge in the past.
Significantly better sound quality
“Ponto Pro has opened a whole new world of sounds for me. The sound quality is also significantly better,” says Justin. “It’s wonderful to be in a situation with loud sounds or crowd noises and have the directional microphones kick on and focus in on the sounds I want to hear. Before, I would have to stand up close to the speaker or even try to read lips. It was very draining.”
As for the aesthetics, Justin loves the sleek, ergonomic shape of his new Ponto Pro. “I am not that concerned about looks after my many years with the headband,” he laughs. “But the Ponto Pro is very cool. The shape is a lot more modern, and it almost looks like a Bluetooth device. Of course, it blends in so well with my hair that most people don’t notice it.”
He also likes Ponto Pro’s large, easy-to-locate buttons. “It’s really great to be able to push a button and adapt to my surroundings. It’s not one setting for all listening environments,” he adds. “I even have a setting for driving in the car. Rather than zero in on the sounds in the car, I can switch to a program that allows me to be more aware of road noises, such as the sirens of an approaching emergency vehicle.”
“What I really appreciate is how durable my Ponto Pro is,” he says. “A number of times I’ve dropped it onto a counter or watched it roll off a counter in the horrified slow motion I used to have with my old processor. But my Ponto Pro processor stays intact and keeps on working.”
No more hassle with heavy headsets
One small but important change for Justin is the ability to easily listen to music on his MP3 music player. “Before, I had to wear a massive headset that fit over my headband if I wanted to listen to music while I exercised,” he says. “As headsets got smaller, I still had to wear the large, awkward-looking models. Now, I just plug into a port on my Ponto Pro and the sound is clearer and more enjoyable than ever. No more hassle with heavy headsets!”
Benefits from being an advocate
With his ability to engage more easily in conversation and interaction with groups, Justin has renewed his commitment to becoming an advocate for people with microtia/atresia and all types of hearing loss. And he’s found that he benefits as much as the people with whom he connects. Growing up in a small Ohio town, Justin had never met another person with microtia/atresia. His advocacy work recently brought him to a national conference, where he shared experiences with a young man who had also never met someone with a similar condition.
“As I’ve gotten older, I realise that everyone has had difficult things to go through,” he says. “Everyone has a ‘condition’, and mine is just a little more visible. If I can help someone by sharing my story, or by finding needed information or easing a fear or a concern, I am happy to do it.”