Contributed by Debbie Clason, staff writer, Healthy Hearing
Lucy Brown is an active 12-year-old who has just been accepted into her middle school’s medical program and dreams of one day becoming an ear, nose and throat doctor as well as a member of the Olympic gymnastics team. Perhaps the only difference between her and the other Level 8 USA gymnasts she competes against is the bone-anchored hearing system she wears to help her hear.
“Her dream is to one day compete in the Olympics,” Lucy’s mom, Georgene, shared with a laugh. “As her parents, we would be thrilled if she just earned a college scholarship.”
The South Florida dynamo began life as You Meng Ke in the Guangxi province of China. She was born with microtia and atresia of her right ear, a deformity that her Chinese medical reports said did not affect her hearing. Georgene and John Brown adopted her from America World Adoption agency’s minor medical special needs list and in January 2010 at the age of two, You Meng Ke became Lucy Brown.
Because she had clear speech, great balance and normal social skills, the Brown’s family doctor and ENT said Lucy’s hearing was fine.
All of that changed when Lucy failed her kindergarten hearing test years later. “As her mother, I was sure she wasn’t paying attention or having an air-headed moment,” Georgene said. But a follow-up MRI revealed that while parts of her inner ear were developed, the entire canal was blocked with tissue.
“As her mother of two and a half years, I was crushed,” Georgene remembered. “I cried the entire way home wondering how I couldn’t tell she couldn’t hear. My husband, a disabled veteran, said we should just drive on because Lucy doesn’t feel sorry for herself.”
Lucy, who had been tumbling since she was three, did continue on—until pus from a staph infection in her cheek collected behind her deformed ear, prompting a LifeLine flight to Miami’s Children’s Hospital and a referral to ENT Dr. John Li. That night she tried on a bone-anchored hearing device in a headband and, for the first time, was able to hear clearly in her right ear. That was the summer of 2018.
About bone-anchored hearing systems
Unlike hearing aids, bone-anchored systems are surgically implanted devices that send sound vibrations directly to the inner ear through the skull bone. These systems work best for people who have at least one inner ear that functions normally. The best candidates are children or adults who have severe outer or middle-ear malformations like Lucy, or those with single-sided deafness.
Bone-anchored devices have two parts, a titanium bone implant and an external sound processor. The implant often contains a small abutment that sticks out through the skin and attaches to the external part of the device, which contains a microphone and sound processor. Sound collected by the processor is converted into vibrations and sent to the implant, which vibrates the surrounding bone. These vibrations send sound waves to the inner ear that stimulate hair cells and fire the auditory nerve.
In the U.S., there are two major manufacturers of bone-anchored systems, Cochlear Americas (Baha) and Oticon Medical (Ponto).
More engaged, assertive and confident
“We knew the headband would not be a good option for Lucy,” Georgene said. “She was way too active in gymnastics and always tumbling.” Research led the Browns to Oticon and its Minimally Invasive Ponto Surgery (MIPS). Now Lucy wears an Oticon Ponto, a system that Georgene said has made Lucy more engaged, assertive and confident.
“Gymnastics along with her Ponto have made Lucy a very powerful little girl,” Georgene said. “She is strong, confident and has a wonderful self image despite her deformity. She will lift up her hair to show you her deformed ear.”
Advice for others
Georgene, who admits she was “concerned about surgically implanting a metal abutment” in her daughter’s skull as well as the teasing Lucy would likely endure from classmates, now says she wishes they would have done this years sooner. “Little did I know this would be one of the best decisions for us.”
Lucy echoes her mom’s sentiments. “The benefits are amazing,” she said, in true preteen fashion, “such as being able to listen to music through Bluetooth and speak on the phone.”
Today Lucy is a force in the gym, having just perfected a double back handspring on a four-inch balance beam and a round-off back handspring full on the floor. Thanks to the Ponto, she can hear a basic conversation in a gymnasium full of coaches, competitors and loud music. Her short-term goal is to achieve four clean routines in all four events of her upcoming competition and qualify for state and regional competition. Her spirit is indomitable.
“I know no matter what or how I do, I am already a champion,” she said.
Where to go for help
If you think you or a family member might benefit from a bone-anchored hearing system, consult an ear, nose and throat doctor. Search this Oticon directory for a list of providers in your area.