Kelly P. and her husband were shocked when they found out they had a child with hearing loss who would not develop speech without assistive technology. Ready to face the unexpected, they gave him hearing aids until those were no longer enough. Now that he has a cochlear implant, the family celebrates every sound that he hears and looks to him as a role model for their family:
“’Your son has severe bilateral sensorineural hearing loss and will not develop speech without the use of assistive technology.’ We can still remember the silence and shock of that moment when the audiologist uttered those words after Levi’s first auditory brainstem response (ABR) test. Words that changed our lives and sent us down an unfamiliar but amazing path of parenthood.
Let us backtrack a little. Levi was born into the world with zero complications. The pregnancy itself was near perfect without any issues or red flags. Nothing can prepare you for the birth of your child. It was the most exhausting, yet beautiful day of our lives. We were over the moon.
Hearing screenings and tests
As is customary today, a newborn’s hearing is tested at just days old in the hospital. Levi failed his initial screening, but we were reassured it was very common, most likely fluid from birth, and it would clear in a day or so. They screened him again the next day before we were discharged and the results were the same. Still, we were told the ‘fluid’ story and to have a third screening in a week or two. At this point we started to worry. So, we went ahead and scheduled the follow-up screening and again, he did not pass. The last step in this process was for Levi to have an ABR.
Fast forward to the day of the ABR and those words uttered by his audiologist. As you can imagine, being first time parents, sleep deprived and trying to find our new ‘norm,’ this news shattered us. We grieved for days. One of the most difficult parts about this was that it was so unexpected. We have no hearing loss on either side of our family, and we were told by every professional who we saw before his diagnosis that we should not worry. If we could go back to those early days, I think we would have just hoped for one person to tell us that there was a possibility our son could not hear. One person to let us know that even if he was diagnosed with hearing loss, life would still be pretty amazing for us.
Levi’s first hearing aids
Levi got fit for his first set of hearing aids when he was 4 months old. Two sets of ‘Caribbean Blue’ ears to fit his adorable little self! He did well with his hearing aids, but as he got older and we began to do some booth testing with him, it was determined that his hearing loss was already getting worse. We had an MRI done and another brainstem auditory evoked response (BAER) exam where it was confirmed that he was now severe to profoundly deaf.
During this time, we also got the news that based off his MRI, it appeared Levi had a genetic related loss. His ear, nose and throat doctor (ENT) wanted us to follow up with genetic testing to confirm this, to which it did. Levi has a rare, x linked hearing loss that comes directly from me (his mama). Although all his ear anatomy is intact, his cochlea are widened, which was what gave his doctor the hunch that his loss was genetic. As if being a mom of a child with a newly diagnosed disability was not hard enough to swallow, I had this to grieve about as well. With the support of our close family and friends though, we quickly became determined to do anything and everything we could that would allow our son to enjoy all that life has to offer.
Time to consider cochlear implants
Due to Levi’s progression with his hearing loss and with the new genetic information we had, we sat down with his early intervention team to see what our next steps should be. It was highly recommended that we seek out a surgeon who had years of experience working with atypical ear anatomy to see if Levi would qualify for cochlear implants. We spent most of last year traveling out of state, by train. We attended several evaluation appointments and finally met with his new doctor, where it was confirmed that we would begin implantation in one ear.
In July of 2018, we made the decision to have his right ear implanted. After speaking with his surgeon and our early intervention team, we were so excited to become a part of the Cochlear team! Since Levi would still wear his hearing aid on his opposite ear, we loved everything about how the Cochlear™ Nucleus® 7 Sound Processor would look like when the two would be paired together.
Opening up our son’s world of sound
It was hard to believe that something so lightweight and discreet would be able to provide our son with a whole new world of sound. Cochlear was also the brand that our audiologist (and state in general) were most familiar with, which made the decision even easier for us when we were deciding on a brand. Lastly, we received quite a bit of positive feedback from our online support groups regarding Cochlear’s customer service. This was the last piece we felt we needed before making our decision complete!
Surgery went beautifully and so did Levi’s recovery. He was then activated in August. We are currently approaching a year post activation and Levi’s progress with his implanted ear has been astounding. At his last mapping session, he was testing at approximately a 25dB hearing level, something he has never been able to achieve prior to implantation. The combination of the Nucleus 7 Sound Processor and his hearing aid are currently giving him what he needs to develop speech. His vocabulary has sky rocketed in the last month or so, and we are very anxious to continue seeing his progress! He will eventually be bilaterally implanted, and we have absolutely no regrets in choosing Cochlear for him.
Since Levi is still adjusting to his implant, we have not been able to try out the Mini Microphone yet, but we are looking forward to using it the near future! For me, I am most excited about the Aqua+ kit1 though, as Levi loves anything to do with water. Before he was implanted, we found ourselves avoiding places like the beach or even a swimming pool because our hearts would ache that he would not be able to hear us or enjoy the beautiful sounds of the water. We are so excited for him to experience water activities in a whole new way.
Having a child with hearing loss
Aside from Levi having permanent hearing loss, he is such a happy and typically developing little boy. He loves playing outside, listening to music in his rocking chair and reading stories every night before bed time with his daddy. He also has a 6-year-old (fur baby) brother, and often you will find the two of them side by side snuggling or playing fetch in our backyard.
We are eager to expand our family and give Levi a sibling someday, as we truly believe he will be an incredible role model. With the understanding that we could have another child with hearing loss, it no longer brings us fear or anxiety. Because of the combination of technology, speech therapy and parent advocacy, our kid(s) will be able to achieve anything that they set their minds to, and as parents, there is not anything much better than that.
Having a child with hearing loss has given us an entirely different outlook on our life. We celebrate every new sound or word that Levi learns. We listen eagerly to airplanes, trains in the distance, garbage trucks and birds chirping. He has opened our world to show us just how much it has to offer, and we have assistive technology to praise repeatedly for that.
It has been such a pleasure sharing a little piece of our story with you all. We are grateful to be a part of this wonderful community.”
Do you have a child with hearing loss? Are you looking to give them access to sound? Learn more about cochlear implants for your child today.
- The Nucleus 7 Sound Processor with Aqua+ is water resistant to level IP68 of the International Standard IEC60529. This water protection rating means that the sound processor with the Aqua+ can be continuously submerged under water to a depth of 3 m (9 ft and 9 in) for up to 2 hours. This water protection only applies when you use a Cochlear Standard Rechargeable Battery Module or Cochlear Compact Rechargeable Battery Module.
