We continue to mark Hearts for Hearing’s 20th Anniversary with continued focus on our remarkable patients – like Josie – who we are proud to feature as our latest Patient Hero. Josie became a bit of a local social media sensation when she was 3-years-old and the Oklahoma City Thunder organization recognized and celebrated the moment Josie’s hearing technology was activated, and she was able to hear clearly for the first time.
Today, Josie is an active child who loves playing basketball and soccer and participates in cheer and is an avid gamer skilled at Roblox and Minecraft. Josie also likes to draw in her spare time. These activities are certainly typical playtime and hobbies for Josie and her friends however her parents marvel as they consider what she’s accomplished considering how her life began.
Josie was born at only 25 weeks and weighed one pound, eight ounces when she was delivered. Sadly, her twin brother passed away at 18-days-old. Thankfully, Josie was able to survive her tiny beginning, and she remained in the hospital’s neonatal intensive care unit for 143 days. “While there, Josie received her newborn hearing screening, which she did not pass. We were told it is not uncommon and recommended for follow-up screening.” says Josie’s mom Kaele, “Ironically, at Josie’s rescreen, she passed in one ear but not the other. That’s when we were referred to Hearts for Hearing.”
The professional team at Hearts for Hearing conducted what is known as an Auditory Brainstem Response (ABR), and after several tests with varying responses, Josie met with Dr. Elizabeth, her audiologist. She shared Josie’s diagnosis of auditory neuropathy and explained it can be caused by a disruption of nerve impulses travelling from the inner ear to the brain. A person with auditory neuropathy may be able to hear sounds but can have difficulty recognizing spoken words because sounds may fade in and out or seem out of sync.
“We were numb,” says Mom Kaele, “Josie had already overcome so much. We were confused, no one in our families had hearing loss, and we didn’t know anything about it.” Mom continues, “We were almost in denial … we wholeheartedly believed she could hear because she was responding to things we would say to her.” They learned Josie may hear certain sounds some days and not others.
“After considering all options, we decided to go the route of using technology because we wanted our daughter to have the opportunity to hear the world and learn to listen and talk,” says Mom. “We started with hearing aids but pretty quickly realized the devices were only amplifying out of sync sounds she was already hearing.”
At 2 ½ years of age, Josie received her cochlear implants. According to her family, from that moment, Josie has thrived. She loved working with her speech-therapists Jennifer and Abby, and she participated in developmental programs at Hearts for Hearing including Listening for Littles, Bridges, and Summer Camp. Bridges was so much fun, Josie encouraged her younger sister, with no hearing loss, to attend classes with her as a peer model, and her older sister volunteered at Summer Camp. Hearts for Hearing became a true family affair. Even her father, a firefighter with the Oklahoma City Fire Department, supports Hearts for Hearing through the city’s annual Heart of the City fundraising effort. Mom says, “We are so very thankful to know Hearts for Hearing is a community we can always count on – whether it is a shoulder to cry on, lean on, or cheer on, we are grateful for the services they’ve provided to families like ours.”
“Deafness does not have to be a scary diagnosis, and it does not define your baby. Your child is perfect, and you are not alone. Advocate for your child. I advocate every day for Josie. I want her to know cochlear implants will not stop her from pursuing her dreams, and she can do whatever she chooses. Sometimes, we may have to modify a bit, but that is completely okay. I believe there is no limit to what she can accomplish, and I am grateful Hearts for Hearing has been a steady partner on our journey.”