Community Spotlight: Celia’s perfect hearing technology combination for unilateral hearing loss
Within the first day of Celia’s life, it was suspected that she had a hearing loss.
Although it was suspected it still took 18 months to officially diagnose her with unilateral hearing loss. Having had to wait almost two years to finally get an answer about her daughter’s hearing loss, Tracy Pursifull, Celia’s mother, was glad to know the diagnosis.
“I was honestly relieved,” says Tracy. “ I had suspected it since the first time she had that newborn screen at one day old. She wasn’t talking and was clearly having difficulties hearing in different environments, so while the first facility wanted me to follow up a year later after their 10-month test, I pushed for every month until they could give her a diagnosis. At the new facility, the audiologist later told me how surprised she was at how well I took the news when they told me she did, in fact, have hearing loss and we could get her a hearing aid. I had been researching and chasing for 18 months, I was happy and I was ready!“
The search for the right hearing technology
Once Celia was diagnosed with unilateral hearing loss, her family started the search for hearing technology. They were looking for the best way to help their daughter. By the time she was two years old, her hearing loss had progressed to profound, leaving them with limited technology options.
The first device they tried was an FM system, the Phonak iSense Micro, which Celia wore in the better ear. This worked well and she used it until she was five years old. Unfortunately, Celia suffered from a bad ear infection that led to a perforation in her eardrum. This gave her a conductive hearing loss in her better hearing ear. During that time she had to switch technology and use a BAHA device while her ear healed to allow her ear to heal.
Once her ear healed her family tried the Phonak CROS. In the end, the CROS device wasn’t a successful option and she would soon be starting school. It was an ongoing journey of trial and error for the Pursifull family, trying to find the best solution for Celia.
Finding the right solution
Next, her family decided to try a unique solution, Phonak Sky V for her hearing ear paired with a Roger system. Again they had found a solution that worked well for Celia at that stage in her development/life. This ended up being a temporary solution and her family began looking into getting a cochlear implant for her deaf ear. With the background noise of being in school, listening with just one ear was getting difficult for Celia.
When she was six years old, she was implanted with an Advanced Bionics Naida CI in her left ear.
“Today, she is using a combination of the CI in her left ear with that same Sky V hearing aid as a link to her Roger system in her right and it has been the perfect setup for her!” Tracy explained.
Tracy also mentions that despite the struggle to find the right technology, she is still grateful for each of the technologies that Celia used over the years.
“At 18 months old, she still wasn’t talking. She was very affected by that mild-moderate loss in one ear. Within weeks of starting with her hearing aid, she started talking and caught up very very quickly. Just last month, she was one of the main characters in her first school play!”
The fight for technology- even when professionals advised against it
Due to the lack of research on unilateral hearing loss, it’s not uncommon for hearing care professionals to advise against using hearing technology. Now with more research being done, it is clear that children with unilateral hearing loss are at risk for speech and language delays and difficulty at school. Children with UHL can benefit from using hearing technology because one ear is not enough for a full listening experience.
As Tracy was figuring out the best path for her daughter, she experienced a lack of support as she tried to find the right solution.
“In the beginning of our journey, I didn’t know anyone with any degree of hearing loss or any parents of children with hearing loss and I was left to find our way on my own,” says Tracy. “I wasn’t referred to any agencies, I wasn’t given any informational packets, I was just left with nothing because it was considered a non-issue.”
Despite the challenges that come along with finding the right technology for Celia’s unilateral hearing loss, Tracy and Celia have remained positive.
“Her hearing loss never scared me or intimidated me, and we’ve always talked about her hearing loss as something we are proud of,” says Tracy. “It is one of the things that makes her who she is! Today, at eight years old, she proudly talks about her hearing loss and loves to show off her devices.”
Tracy also recommends keeping a positive attitude and staying optimistic through the trial and error of trying different hearing technology.
“It can definitely feel discouraging and overwhelming at times. Put parents should keep at it because when they find the technology that works great, they will be so relieved. They can then use their experiences to try and help someone else who is just starting to figure all this out or someone who feels they’ve exhausted all of their options.”
She also recommends that parents keep in mind of the trial and error process that comes with finding your children hearing technology. Although you may try a specific kind of hearing technology once and it doesn’t work, don’t let that stop you from trying it again.
“We went through so many different devices, and we tried using them in all kinds of different ways until we found what worked best for Celia. Also, while a technology may not be suitable for you at a certain stage, it may become helpful later. We started with a hearing aid, went through other devices, then circled back around to a hearing aid again after her needs changed. You might find using more than one technology is actually the perfect combination!“
What hearing technology has worked best for your child’s unilateral hearing loss? Let us know in the comments!