Sherri and Justin Gerbrandt are the parents of Kinsley, a two-and-a-half-year-old girl with single-sided deafness (SSD). They were kind enough to share their family’s quest to help Kinsley hear better with Oticon Medical.
Kinsley was born on Christmas Day 2018. Being a holiday, the hospital was short-staffed, and so they didn’t perform a standard newborn hearing screening. It wasn’t until she was five weeks old that Kinsley’s hearing was tested, and the family learned that she had severe-to-profound hearing loss in her right ear—a condition the family later learned might be genetic in the paternal side of Kinsley’s family.
Their initial response was very emotional. The first thing they did when they got home from the audiologist appointment was research how accurate an ABR (auditory brainstem response) test was, as they didn't want to believe the diagnosis.
"There were many days I would break down, and wonder what my daughter's future looked like with only being able to hear from one ear," Sherri said. "I think the worst part about it was hearing well it could be worse or see she can hear! But no one understood the challenges Kinsley would later face in life only hearing from one ear."
The journey toward treating Kinsley's SSD
However, they soon shifted from denial to determination to learn everything they could about their daughter’s condition. Sherri and Justin found it difficult to find research on SSD and realized awareness of the condition was very low. It was even harder to locate other families who might be going through a similar situation. Ultimately, they found some support in Facebook Groups.
At the time, no hearing solution was offered because in their area SSD was not considered as a condition qualified for treatment with a cochlear implant. It wasn't until the family did their own research and asked to be referred to a clinic that could offer her the implant, that any progress was made. Kinsley’s family considered travelling to another region and paying out-of-pocket, but the cost was prohibitive.
"I was extremely frustrated," explained Sherri. "It wasn't until we took Kinsley for her one-year follow up with her ENT where I broke down in tears BEGGING for them to help our daughter. I asked the ENT, Do you have children? If your children were born with SSD, would you be telling yourself they will be fine? We were born with two ears for a reason, and sure, she might be fine, but I wasn't okay with this. What about her safety when crossing the road? If she couldn’t hear from both ears, she would never be able to tell where sound is coming from. What about listening fatigue? What about when she is in a loud environment and cannot filter out the sound? Why does my child have to be completely deaf to be able to qualify for a CI?”
A few days later, after Sherri begged the ENT for help in advocating for her daughter, the family received a call back that Oticon Medical would work with them on providing Kinsley with a cochlear implant. She received a Neuro™ cochlear implant system from Oticon Medical.
Kinsley was born on Christmas Day 2018. Being a holiday, the hospital was short-staffed, and so they didn’t perform a standard newborn hearing screening. It wasn’t until she was five weeks old that Kinsley’s hearing was tested, and the family learned that she had severe-to-profound hearing loss in her right ear—a condition the family later learned might be genetic in the paternal side of Kinsley’s family.
Their initial response was very emotional. The first thing they did when they got home from the audiologist appointment was research how accurate an ABR (auditory brainstem response) test was, as they didn't want to believe the diagnosis.
There were many days I would break down, and wonder what my daughter's future looked like with only being able to hear from one ear," Sherri said. "I think the worst part about it was hearing well it could be worse or see she can hear! But no one understood the challenges Kinsley would later face in life only hearing from one ear.
The journey toward treating Kinsley's SSD
However, they soon shifted from denial to determination to learn everything they could about their daughter’s condition. Sherri and Justin found it difficult to find research on SSD and realized awareness of the condition was very low. It was even harder to locate other families who might be going through a similar situation. Ultimately, they found some support in Facebook Groups.
At the time, no hearing solution was offered because in their area SSD was not considered as a condition qualified for treatment with a cochlear implant. It wasn't until the family did their own research and asked to be referred to a clinic that could offer her the implant, that any progress was made. Kinsley’s family considered travelling to another region and paying out-of-pocket, but the cost was prohibitive.
“I was extremely frustrated," explained Sherri. "It wasn't until we took Kinsley for her one-year follow up with her ENT where I broke down in tears BEGGING for them to help our daughter. I asked the ENT, Do you have children? If your children were born with SSD, would you be telling yourself they will be fine? We were born with two ears for a reason, and sure, she might be fine, but I wasn't okay with this. What about her safety when crossing the road? If she couldn’t hear from both ears, she would never be able to tell where sound is coming from. What about listening fatigue? What about when she is in a loud environment and cannot filter out the sound? Why does my child have to be completely deaf to be able to qualify for a CI?”
A few days later, after Sherri begged the ENT for help in advocating for her daughter, the family received a call back that Oticon Medical would work with them on providing Kinsley with a cochlear implant. She received a Neuro™ cochlear implant system from Oticon Medical.
The benefits of a cochlear implant
Words cannot describe how thankful we were for this opportunity, said Sherri.
Kinsley was implanted in the spring of 2020, when she was 13 months old. Due to the timing of the Covid-19 outbreak her activation, which normally would have occurred one month after surgery, had to be delayed until she was 16 months old. Since then, she has been wearing her processor during all waking hours.
Her family has seen a difference already. Kinsley now turns her head toward the direction from which sound is coming, which is something she didn’t do previously. She has achieved all her developmental speech milestones so far and has begun to use words to ask for her processor. “Upon waking up and getting out of the bath, Kinsley will say, My ear not working to ask for her processor to be reattached,” said Sherri.
Sherri has since become an active advocate in her Facebook Groups. “I am in four different Facebook Groups. In these groups, I will post updates on how Kinsley is doing along with answering any questions that parents might have. The most important part about all of this is to let the parents know their child is going to be okay!”
Today Kinsley is doing great, and the family is keen to get involved in any way possible to help other families, and to spread the word about their daughter’s success with her Neuro system.
"As a parent you want to set your children up for success," Sherri said. "If it wasn't for Oticon Medical Kinsley wouldn't be where she is today. We are amazed every single day on how she has made her CI a part of her and she is so proud! Of course, we had to add sparkly stickers to her processor, too, so it stands out!"