I’ve been wanting to write this blog post for a long time, but I wasn’t sure when I’d have “all the answers” or be ready to share. Very few people know that our son, Zane (4), has been diagnosed with profound sensorineural hearing loss in his right ear. Put simply, he’s deaf in his right ear. No, he was not born deaf in his right ear, in fact, he passed his newborn hearing screening and had normal hearing in both ears until about 2.5 years old.
After months of testings, appointments, research, talking to parents, speech therapy, and the list goes on and on, we’ve decided to move forward with a cochlear implant (Google it). A cochlear implant is Zane’s only chance at ever being able to hear out of his right ear again.
I’m sharing our story with you today to bring awareness to this issue and to educate others about hearing loss and cochlear implants because our road to this discovery and this point hasn’t been straight and narrow.
Here’s our story
When Zane was 2-2.5 years old we started to have concerns about his speech. It wasn’t that he wasn’t talking, it was that his articulation was off and there were a lot of words he would say that we couldn’t understand. I brought the concern to his pediatrician and she recommended we get him evaluated & have a hearing test done.
We took the advice of doing an evaluation (in which they assess all areas of a child’s development) and he “passed” without concern. Given that news, I did not move forward with a hearing test at that point. Fast forward to a few months later and we noticed his speech hadn’t improved much with his age. He was getting really frustrated when trying to communicate and it made it really hard to understand what he needed from us sometimes (bless Lyla for being our child whisperer and translating his needs to us).
It wasn’t until a few months later I called the pediatrician again to request a new script for a hearing test because we were going to start looking into speech therapy. Honestly, I thought this was going to be something that we just marked off of our to-do list so we could go on our merry way to speech therapy.
Wrong.
After the audiologist conducted her hearing test she revealed to me that Zane had mild-moderate conductive hearing loss. In simple terms, this is the type of hearing loss that hearing aids can assist with. As you can imagine, that news shocked me to my core. I sat there, dumbfounded. The audiologist was trying to explain to me what it meant (in medical terms of course) so not only was I trying to digest the fact that I was told my son might need a hearing aid, but I’m also trying to translate what the hell she was telling me in medical terms.
I sat there, frozen, with a million things running through my head. All it took was for her to say the words, “I know this is really hard for you to hear as a mom,” before just losing it in the hearing booth. The thought of my little boy having to wear a hearing aid? I couldn’t wrap my head around it. Little did I know what journey we were about to set out on.
Continued testing
At the time I’m writing this post, we are a little over a year into this journey. After the first hearing test they required us to keep coming back for repeat testing every 4-6 weeks. Each time we went back we discovered that his hearing in that ear had slowly declined. At that point, they had recommended doing a sedated ABR test & MRI which required Zane to be put to sleep for testing. The results from that test told us that the hearing loss (at that point) had remained conductive hearing loss (good news) and that anatomically the ears looked exactly the same. Therefore, it did not give the doctor any indication or reasoning why the right ear lost hearing, but not the left.
After the testing was done we sat with the audiologist and started talking about different hearing aids. She went over the test results and told us that it was good news that it wasn’t sensorineural hearing loss (Google it). We were somewhat relieved, and had expected to move forward with further testing and to get fitted for a hearing aid (we had somewhat started to cope with this idea).
Then covid happened and it shut down the world and delayed and further appointments or testing for months. At least 4-5 months went by before we could get Zane in for another hearing test, only this time, we got the worse news. Again, his hearing had declined and this time it was considered profound (deaf) sensorineural hearing loss.
My world shattered in an instant. In a matter of months (from the first time we tested until that day) his hearing had gone from mild-moderate conductive hearing loss to profound sensorineural. To this day, we have no concrete explanation, but the doctor does suspect one potential cause (more on this later).
This diagnosis brought on more testing and appointments including genetic testing. We waited 8 weeks for those test results (our only hope for answers at this point) only for the results to create more questions instead of answers. Turns out, two of the gene mutations (or codes?) that Zane is a carrier of have NEVER been reported in the genetic database. I kid you not. What does this mean? It means that there is no data on either of those two genes to tell us anything about anything. Could they be a gene mutation that causes hearing loss? Maybe. Could it be a gene that causes you to grow an elephant trunk? Also maybe. But, until someone else reports the same gene mutation in the database there is nothing to compare them/ him to.
What caused his hearing loss?
Because the MRI showed no anatomical differences in his ears (no differences in his bones, ear canal, etc.), and genetics didn’t give us answers, our doctor suspects the likely cause to be CMV. What is CMV? Well, you can Google it, but I’ll share what little I know. I’ve saved myself the tears of going down the Google rabbit hole and researching it too much myself, but CMV is the #1 cause of hearing loss in children. If you’re a mom and you’re reading this, did any doctor ever tell you that? Me neither.
Apparently, CMV is just like a regular common cold but is most harmful to babies in the womb if the mother contracts the virus. I never knew I had it. If I tested for it while I was pregnant, I was never told about it. Did you know in Canada they test babies for it at birth because it’s SO common and, again, the #1 cause of hearing loss in children? Yeah, not here in the US.
What’s more upsetting? If this was all caused by CMV the chances of him losing hearing in his good ear up to age 18 is pretty high. And, while I know this is a life altering medical condition and not life threatening, it’s something I never expected to deal with or wanted for my child.
Next steps
After consulting with multiple professionals across two different hospitals, tons of parents in similar situations, research, and everything in between, we’ve decided to move forward with a cochlear implant which is a pretty major surgery. As a result, Zane will need to wear a device around his hear connected to a processor that stick to his head with a magnet (that’s under his scalp and connected to a device that helps him hear). His surgery is scheduled for March 19th, 2021. The road doesn’t stop there though. There will be months, if not years, of therapy that will help him learn how to “hear” again in that ear. You see, the sound that comes through a cochlear implant is an electronic sound, similar to a robot. During therapy, he will have to learn how to listen with the ear with the cochlear implant so that his brain can learn how to make sense of the sound. We have a long road ahead of us.
I cry every time I think about it. I cry thinking about this device being stuck to his head for the rest of his life. I cry thinking about the kids that will be mean to him in school. I cry thinking about the moments we’ll be in stores and people will stare at him and wonder what’s on his head. I cry thinking about the moment I’m at the park with him and a kid asks him why he’s wearing it. I cry thinking about the moment Zane might ask why he has to wear it but no one else does.
I really hope at this point we’re doing what’s best for him. I hope that one day he’ll thank us for giving him the best access to sound. I hope that one day his cochlear implant will just become a part of him and our new normal. I hope that he grows up to be a confident little boy who is able to explain to others that he needs this to hear just like some people need glasses to see.
I know that one day we’ll look back on this time and say to ourselves, “what were we so worried about?!” But, if I’m being honest, I wish we could fast forward through this all and already be at that point.
This journey has also taught us to be incredibly grateful that all we’re dealing with is a hearing issue with one of our children. Each time I go to Nemours hospital for a test or speech therapy I think about the kids who are a few stories above that are fighting for their lives. I’m grateful that we’re only dealing with an issue that is life altering, not life threatening and that is the silver lining in all of this.
If you’ve made it this far, thank you for reading our story. Please keep Zane in your thoughts and prayers as we approach his surgery date and everything that follows.
Xoxo,
Kristi
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