Can you imagine a world of silence? Dogs barking but you can’t hear the bark? Watching Looney Tunes on TV, but can’t hear Donald Duck? Or trying to explain something to your parents, but can’t hear what they are saying? Entering a world of unfamiliar sounds and noises at 8 years old may seem frightening and scary for most, but not for the brave and courageous cochlear implant recipient, Ashley Sorensen.
Ashley was one of the first patients to ever receive the cochlear implant, also known as the “bionic ear,” at Dayton Children’s. For the past 20 years, Ashley has now been able to live a normal life, hearing and doing what her friends and family are doing thanks to the cochlear implants.
“I would play with my dolls, but I couldn’t hear my parents,” explains Ashley. The frustrated child learned to read lips at a young age and found different ways to communicate to her family. Ashley’s mom Kim Justice, however, was not willing to allow a life like that for her daughter.
“As a mother, I knew she had a hearing condition at 6 months old. However, it took another six months until Ashley was a year old for doctors to be convinced,” says Kim. “After Ashley was found to be almost completely deaf, she was given hearing aids that helped just ever so slightly. Even with the hearing aids, I had to stomp my feet or clap my hands to get Ashley’s attention.”
At age 4 Ashley was sent to preschool where she started grade school soon after. In second grade, Ashley’s teacher approached her mom and mentioned that Ashley might be a candidate for the new cochlear implant procedure. Immediately after conferencing with Ashley’s teacher, Ashley and her family made an appointment to see Terrence Schneiderman, MD, former cochlear implant surgeon at Dayton Children’s. Ashley was told right away she was a candidate for the procedure and Ashley’s mom agreed to continue with the surgery. Twenty years ago, this was a brand new procedure and had just been made available at Dayton Children’s.
The surgery lasted nearly six hours and after the procedure, they had to wait approximately six weeks for recovery before turning them on. Once Ashley was fully healed and ready to hear for the first time, her mom was given the opportunity to say her first words.
“Ashley never once complained about being able to hear noise or wanting to take them off. The only time she took them off was before bed. Ashley was willing to go through therapy and never mentioned not wanting to do it,” says Kim.
After the procedure, Ashley underwent six to eight months of intense therapy with Dayton Children’s speech pathologist Terry Wiegel. She learned how to associate different sounds with objects such as drums, bells, and other instruments. Ashley and the other cochlear implant recipients were also taught how certain letters sound and how to understand different words and sentences. More specifically, Ashley remembers an activity that helped her practice sounding out the syllables of words.
Terry and Ashley also did an impressive activity at Grand Rounds, an educational session for doctors. The activity showcased Ashley’s progress and surprised many doctors from the Dayton area as well as other officials in the medical field. Terry covered her mouth so Ashley couldn’t read her lips and asked for parts of a Mr. Potato head toy. Ashley was able to completely build the Mr. Potato head by associating the sound of the words she heard with the objects.
While continuing therapy at Dayton Children’s, Ashley was nominated as a patient ambassador for Dayton Children’s allowing to share her story within the community. She was also featured in an issue of Dayton Children's magazine, Growing Together. Practicing her speech not only at the hospital, she was also receiving therapy from her public school. Ashley continued to improve her speech and was holding conversation with her peers in no time.
“Ashley’s mom was so dedicated and motivated. She wasn’t willing to give up on Ashley and was so good about bringing her to therapy and appointments,” says Terry.
Ashley was able to attend a regular high school and communicate with her peers and teachers. Her struggle to hear the people around her has inspired her to further her education to become a hearing aid specialist. While also managing to get through school and pursue her career, she talks to many customers in and out of her day job at Kroger about her journey to a world with sound. Ashley’s inspiring advice has motivated many nervous candidates who are qualified for the surgery to have it done.
“While at work one afternoon, an older man approached me and said he was told I had the cochlear implant surgery. He mentioned to me how he didn’t know if it was worth it and whether or not he should do it. After talking to him for a while and giving him advice on the entire process, he went through with the surgery,” says Ashley.
This procedure has continued to improve and Ashley ended up receiving a second implant in her left ear this past June. “After the second surgery she even complained about my coughing being too loud,” says Tony, Ashley’s husband. Ashley explained that after she got used to the second implant she couldn’t imagine not having them. She is able to hear what a fan sounds like, a train, cars driving by and other fine details that she couldn’t hear before.
“If it wasn’t for her second grade teacher and Dr. Schniederman, she wouldn’t of made the decision to get the second one which is even more advanced. I would recommend this surgery to any parent given the experience I had at Dayton Children’s,” notes Kim.
Since Ashley’s procedure 20 years ago, Dayton Children’s has done nearly 300 additional cochlear implant surgeries on patients under the age of 20. In order to qualify for the surgery, the patient must be at least 12 months old and no older than 20. They must have a severe and/or profound sensorineual hearing loss bilaterally. The patient must derive no significant benefit from hearing aids as proven through evidence and fail to reach auditory milestones as a child should when developing.
This was a scary decision for Ashley’s family to make because even though a child could meet the qualifications for the procedure, they are told the child will lose all of their residual hearing in the implanted ear. However, Dayton Children’s as well as Ashley recommend this procedure because of the following benefits:
1. Better access to sound, low, mid and high frequency
2. Better quality of sound, because you are not driving sound loudly through an impaired auditory system
3. Better distance hearing, this makes one a better incidental listener and therefore a better incidental learner
“Ashley’s success exemplifies the benefits of cochlear implantation for those with severe/profound hearing loss. Her ability to communicate by hearing and speaking is a testimony to Ashley and her family’s hard work and dedication fostering communication skills. They worked together with ENT physicians, audiologists and speech/language pathologists to maximize Ashley’s hearing and speaking potential,” says Linda McGinnis, Dayton Children’s Audiology Manager.
Since finishing therapy, Ashley has not needed to spend much time at Dayton Children’s, but recently had the opportunity to come back and visit.
“I really enjoyed seeing Ashley again after nearly 20 years,” says Terry. “I was especially impressed with Ashley’s speech and how easy she was to understand. I was also surprised to know that she remembered strategies we had taught her in therapy over 15 years ago (i.e. taking longer words syllable by syllable). I also enjoyed hearing her husband say how much Ashley enjoyed listening to music. That is something we all take for granted, but many severely hearing impaired individuals do not get to enjoy this activity. Being a speech/language pathologist for over 30 years, I found it very rewarding and fun to see one of my previous patients doing so well. We often don't get to see how our patients turn out 20 years down the road. What a pleasure it was to see that in this situation.”
Ashley’s ambassador picture still hangs proudly on the walls of Dayton Children’s to be seen by other patients and families. Ashley is very thankful for the procedure and the care that Dayton Children’s has been able to offer her and couldn’t imagine her life without this procedure.
“Thank you for taking care of me and working so hard, there is so much I could say, just thank you. People would tell me I was brave and have courage and I didn’t believe it until now, so thank you,” Ashley said.
About the cochlear implant clinic at Dayton Children's
The cochlear implant clinic at Dayton Children's provides a comprehensive multidisciplinary approach for the evaluation and management of patients with congenital and acquired severe to profound deafness.
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