A routine hearing test uncovered unilateral profound loss in one of Lyla’s ear, leading to shock for her family. What followed was a story of resilience, advocacy and discovering joy through sound with a cochlear implant, all sparked by a desire to hear Taylor Swift in stereo. Read more about Lyla’s story below:
“Until age 5, Lyla was just like every other kid her age. She had just finished pre-K with the excitement of kindergarten looming in the fall and a fun summer planned.
During preschool, it was mentioned that she should be evaluated for speech services. We knew Lyla had some speech intelligibility and services were approved and followed during her pre-K class. During Lyla’s routine 5 year old wellness check, a standard hearing test was performed. This is the first time they do this test following birth if a newborn hearing screening is passed. Which, hers was.
After several attempts, her pediatrician told us that she failed on her left side and referred us to an audiologist. Months later, it was confirmed – Lyla was diagnosed with unilateral profound hearing loss. We were in shock. We had no idea and there was no way to know when she had lost her hearing, although the doctors suspect it happened early on in life. They also suggested that this could have been the reason for the speech delays and intelligibility. Her speech therapist never suggested testing her hearing during evaluations.
A cytomegalovirus diagnosis
At the time her hearing loss was discovered, her ear, nose and throat (ENT) doctor asked if it would be OK to pull Lyla’s newborn blood spot (heel prick) to test for something called congenital cytomegalovirus (cCMV). She explained that this was the #1 nongenetic cause for hearing loss in children. We agreed and shortly after, we got the news; the blood spot test result came back positive for cCMV.
Again, we were in total shock. We have 3 children, Lyla being our youngest and had never heard of cCMV before. This started me on a long journey of discovery regarding this virus as well as hearing loss and what this would mean for her future.
We were given 2 options when it came to her hearing loss: do nothing or move forward with discussions on cochlear implants (CI)
Discovering a hearing solution
We scheduled a consultation with the surgeon, who said something that really stuck with me. ‘We are given pairs for a reason. Why not offer her the chance at hearing as a pair rather than on a singular level?’ He was right. Why wouldn’t we want to give her the gift of hearing? Yes, she has 1 hearing ear. But why limit her? Also, something worth noting – cCMV can cause progressive hearing loss. This means that Lyla has the potential to lose hearing in her other ear at any time.
We decided that we were not going to wait for that shoe to drop without a plan in place so to speak. We also had the absolute pleasure of meeting Molly, a representative for Cochlear. I was completely blown away by her care and compassion. I never felt as though we were being sold anything, but rather that she genuinely cared about Lyla’s journey and well-being.
We had lunch and she went over everything in detail. She even went a step forward and sent her mock equipment to us for Lyla to see and feel and get used to. After meeting with the surgeon and Molly’s impeccable service, it was settled. We would proceed with the surgery and Cochlear would be our obvious choice for equipment. Lyla also will tell anyone who asks that her motivation for receiving a CI was to hear how Taylor Swift sounds out of both ears. If you’re wondering what the answer is, it is AWESOME!
Lyla’s new way of life with a cochlear implant
Lyla had her surgery, and in August 2024 her sound processor was activated. The first month was a challenge. I am not going to lie. It was hard. However, all of Lyla’s hard work and persistence has paid off. We got the Mini Microphone 2+, which has been a HUGE asset toward her rehabilitation.
Having single-sided deafness (SSD) can be tricky since the hearing ear wants to take over and compensate for that loss. So being able to isolate the hearing ear and push sound directly to the CI via the Mini Microphone has really been instrumental. We also use the TV Streamer! I consider Lyla lucky to have had this surgery at such a young age12. It is now just a part of her and who she is. It will grow right along with her and as she ages, she will really appreciate some of the cooler features of this device.
Overall, she really has taught us so much. She is incredibly resilient and takes it all in stride. Honestly, and I may be wrong, but I really feel like this has given her validation in a sense of, ‘hey, I was trying to tell you when I was younger that something didn’t seem right, yet I didn’t know how. And now, you all know, and I have found my voice.’
We have no regrets. Her mood has changed; her safety has improved. We have since learned that challenges she had previously in her young life, likely stemmed from hearing fatigue. She now looks both ways when crossing the street. All the things that we take for granted.
The future looks fearless
Lyla is an adventure seeker. She loves to climb things and go on roller coasters. As a family, we love to travel. She is a cheerleader, and we have found some cool headbands that ensure her sound processor stays on. She participates in class and with peers more now that she can hear fully.
Throughout all of this, both Lyla and I have become advocates. She seeks out anyone she sees that is wearing any sort of hearing device and wants to share stories. She says she wants other children like her to see more children like them. During Christmastime, she questioned why there were no CI children in the toy catalogs and why there were none in the ads at Target. She would also like to see a Barbie™ that has a CI.
She is observant, witty, funny, kind and fearless. I see big things in her future. We are eternally grateful for the opportunities that lie ahead and for the gift she has been given.”
If your child has been diagnosed with unilateral hearing loss, or single-sided deafness, getting treatment sooner rather than later can have many benefits, including language and social skills. To learn about your options, visit our website today!
3 4- Cochlear implants are FDA approved for those with moderate to profound bilateral sensorineural hearing loss and for those with UHL/SSD.UHL is classified as hearing loss in one ear and near to near-normal hearing in the opposite ear, and SSD is specific to individuals with severe to profound hearing loss in one ear and normal or near-normal hearing in the other ear.
- The Cochlear Nucleus Implant System is approved for use in individuals five years or older who have one ear with a severe to profound sensorineural hearing loss and obtain limited benefit from an appropriately fitted unilateral hearing device and one ear with normal or near normal hearing.
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