The Gift of SoundJune 9, 2018
Story by Allen Laman
Photos by Brittney Lohmiller
No one knows exactly what Charlotte Goeppner actually heard that day.
Sitting on her mother, Samantha (Breitwieser) Goeppner’s lap in a Riley Hospital for Children audiology room, a confused look swept across her face, as if her entire understanding of the world was turned on its head in an instant.
The doctors at the Indianapolis hospital had warned Samantha and her husband, Adam, that their not-yet 1-year-old daughter might react negatively when her cochlear implants were activated and she heard the first sounds of her life. They said she might be scared or overwhelmed by her new sense. Seconds passed after Katie Jones, a Riley audiologist, sent a signal to one of the devices to test their abilities.
And then, suddenly, Charlotte smiled.
Mom wiped away tears of joy. Dad proudly stood in the corner of the room operating a camcorder on a tripod, recording his daughter’s reactions to her newly-activated sense. The moment was a bookend to the first chapter of Charlotte’s short life. Since she was born, the Jasper family had been working toward that moment, a moment that required extensive research, many full-day trips to Evansville and Indianapolis for medical counseling and even a career change for dad.
But in that moment — a blip in time when compared to the journey before and Charlotte’s life after — the Goeppners exhaled a sigh of relief. Their girl could finally hear.
Born into silence
Charlotte Grace existed quietly in the world for the 11 months of her life leading up to that moment. Sam described her only daughter in December, months before the surgery, as an “easy baby.” Compared to her brother, and Sam and Adam’s son, Kolten, 3, who has an affinity for bolting around and exploring, Charlotte was calm and content to analyze the world with her eyes.
She was born with profound bilateral sensorineural hearing loss on May 6, 2017. Following weeks of testing after her birth, a doctor told Sam and Adam that their baby’s deafness was so staunch that the loudness of an airplane taking flight near her would barely be audible. That diagnosis came as a shock to her parents.
On the day of her birth, the Goeppners were initially told that their daughter passed her hearing screening in both ears. After further testing, however, they were told she passed the test in one ear and failed it in the other. Samantha didn’t think much of it. Maybe Charlotte just had fluid in her ears, she thought.
But Charlotte was referred to a Jasper audiologist, where she repeatedly failed hearing tests in both ears.
Samantha was with her mother, Mindy Breitwieser, when the doctor bluntly told her that Charlotte was born with severe hearing loss. Upon receiving the news, Samantha cried and took the rest of the day off work to be with her baby. Adam was away on business.
“I didn’t even think about cochlear implants. I just thought, ‘Well, she’s never going to be able to hear anything,’” Samantha recalled. “‘Is she going to be normal? Are people going to make fun of her?’ And that was my biggest fear.”
Adam remembered breaking down as well. He had hearing problems growing up — he suffered recurring ear infections, had tubes installed in his ears most his life, and to this day, he still doesn’t hear well. Could Charlotte’s deafness have stemmed from them, he wondered. Could he be to blame?
“But then, once you got over that initial shock, it’s like, ‘She’s gonna be fine,’” he reflected. “‘She’s in the best hands that she could possibly be in,’” he said about the doctors at Riley.
He continued: “There’s thousands of people, if not more than that who have cochlear implants, and they function just fine. They can hear, they can articulate their speech and everything. It’s just a matter of getting over that initial shock I think is one of the biggest keys to it.”
Putting a price on hearing
Soon after, Adam’s cousin, Audra Dierkes, provided a calming perspective to the diagnosis that shifted the Goeppners’ mindset from fear and sadness to proactiveness. Though Samantha remembers hearing about implants at Charlotte’s diagnosis in Jasper, Dierkes was the one who really familiarized her and Adam with the devices.
According to the National Institute on Deafness and other Communication Disorders, cochlear implants bypass damaged portions of the ear and directly stimulate the auditory nerve. Signals generated by the implant are then sent through the auditory nerve to the brain, which recognizes the signals as sound.
From then on, it was never a question of whether or not Charlotte should have the cochlear implant surgery. To them, that was a given. They wanted her to function just like everyone else.
It was how they’d give Charlotte the gift of sound, how they’d get to that day in the Riley audiology room — that was the tricky part.
Sam, Adam and Charlotte quickly set up an appointment at Riley. Charlotte had MRIs taken in December to determine if she would be a good candidate for the devices, and everything came back normal. She was given the OK to proceed.
The Goeppners then had to choose among three different companies to determine which device they wanted in their daughter’s ears. They ruled out one immediately, but went back and forth on the other two for months. Each implant is comprised of two parts: an external device with a microphone that picks up sounds and sends them to a speech processor as well as a piece embedded in the skin behind the ear that acts as a receiver and sends the signals to electrodes in the inner ear, or cochlea. The electrodes trigger the auditory nerve and this allows the brain to notice incoming sounds.
One company’s devices had better internal technology — Advanced Bionics — and the other — Cochlear — had better external technology that could link the devices directly to a cellphone, for example.
And not only could Charlotte not hear, but she couldn’t speak or even understand the decision to weigh in on it.
“It’s really a tough decision because you want to make the best decision for her — not what we think it is — but what she thinks would be the best decision,” Adam said. “I think that’s what we’ve been struggling with the most.”
They ended up going with Advanced Bionics implants because they felt the technology and hearing experience they will provide Charlotte will be superior in the long run.
Even before the calendar turned to 2018 and the Goeppners purchased the implants, the family had already spent thousands of dollars on their daughter’s ears. In order to receive cochlear implants, patients have to try hearing aids, and the devices weren’t covered by Sam and Adam’s insurance. The parents said the combined costs of the hearing testing, ear molds, and all of the other prerequisites to get the cochlear implants installed does get expensive.
And with a surgery date looming in the next couple months, they knew even more spending was ahead.
Adam was formerly a full-time software consultant with his own business, Creative Tech Consulting, and Sam was and still is an on-contract veterinarian at the Jasper Pet Clinic. The two paid for their own individual health insurance because Adam was on his own and Sam’s job didn’t offer it.
Then, Anthem Health Insurance dropped out of the Affordable Care Act marketplace, which left them both without insurance at the beginning of the year. Without coverage, the couple faced an overall price tag north of $400,000 for Charlotte’s surgery, implants, doctor appointments, therapy sessions, travel expenses and so on, with more coming.
So, to get good insurance to help with the surgery and other associated costs, Adam quit consulting full time and was hired on as an employee by one of his clients — Cincinnati Public Schools — as the corporation’s business systems analyst. The Goeppners’ max out-of-pocket pay for the surgery ended up being a fraction of the six-figure cost above — just $3,500.
Adam slept poorly in the couple’s hotel room the night before the roughly six-hour surgery, and the stress of the whole ordeal manifested in him fidgeting constantly in the 90 minutes before the successful operation ended.
He and Samantha were anxious partly because they wanted desperately for Charlotte to have the surgery before her first birthday. Earlier is better, said Dr. Charles Yates, the Riley doctor who completed Charlotte’s cochlear implant surgery. Getting the implants in and activated before she turned 1-year-old would allow for better hearing and speech development.
Charlotte was originally scheduled to have the surgery in February, but was turned away at the last minute due to a cold that rendered her ill in the eyes of the hospital. This winter brought flu restrictions to medical centers across the state, including Riley. That experience was emotionally deflating for the Goeppners and they returned to Riley in March, hoping this would be the time.
Following the procedure, Yates described it as a precise operation.
To start, he made an incision behind Charlotte’s ears, granting him access into the inner ear, where soundwaves are turned into nerve signals. Using a microscope, Yates opened the cochlea, implanted an electrode in it, and placed a magnet outfitted with electronics nearby and closed the incisions.
Yates spoke with the Goeppners after the procedure, fielding their questions. He estimated the average rate of failure within 10 years of having the devices is under 4 percent, meaning Charlotte shouldn’t need surgery for quite some time. Many implants last for two or three decades.
But there was no activation that day. Charlotte’s incisions needed to heal before the external pieces could be activated and tested. That happened two weeks later, when, surrounded by family members, Charlotte giggled and smirked as her brain processed the first sounds of her life.
Less than two months after her implant activation, Charlotte, now 13 months old, already reacts to her name when called.
She turns her head when she hears something to her side or behind her. She looks at her parents when asked where mommy and daddy are. During a speech therapy session with her speech language pathologist, Charlotte reached for her headpieces to indicate that the banging her therapist was doing was actually too loud.
Jones, the Riley audiologist who sent the activation signal to Charlotte’s implants, said in an email that Charlotte is making “beautiful progress with her cochlear implants.”
Samantha has noticed a few personality changes in Charlotte since activation as well, though she’s not completely sure if she attributes those to her new sense or her just growing into a toddler. She’s more daring, more apt to crawl away from her parents and explore her surroundings. She babbles more and makes more noise in general, and she’s always hungry, now, too.
Even now, months after the implants were activated, Charlotte still needs to travel to Riley every so often for checkups. She’ll also require auditory-verbal therapy at Easterseals Rehabilitation Center in Evansville up to early elementary school.
But she’s moving forward.
The activation of the implants was the end of one phase of her life, but training and conditioning the implants to do what they’re designed to do will mark the next phase. It’s been a roller coaster of a journey, but Adam and Samantha wouldn’t have had it any other way.
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