Unexpected Diagnosis: Hearing Loss in 2nd Grade
With a household of three boys, quiet isn’t a phrase that it uttered here often. It is loud. All. The. Time. From the moment they wake up (usually in the 6 o’clock hour even on the weekends) until lights out (10pm if I’m lucky), our house is noisy. To combat all this noise, I usually have to be louder then the boys. Even before the three boys I was known for my ability to “project” my voice. Even with my volume ability it never fails that someone “couldn’t hear me”. Because of this I didn’t give it much thought when Owen couldn’t hear me. Selective hearing was my assumption, not hearing loss. However, after a marathon month of hearing tests, it seemed our little Owen had some pretty crappy hearing.
Did we think there was a problem?
For years, off and on, we have thought “hey, maybe he can’t really hear…” The signs were pretty vague – loud iPod, loud TV, repeating questions, etc. As any good parent would do, we investigated it. Starting in Kindergarten (2013) would intermittently fail his hearing screens at school but other times he would pass. We were diligent and took him to our pediatrician & was retested and he passed. We kept a good eye on his screenings at school, every failed screen would match up with a passing screen.
In the fall of 2015 we warned his second grade teacher (the amazing Mrs. Schmidt) of our intermittent hearing concerns at our fall conference. At that time she didn’t notice any issues. Thankfully she had both his older brothers so she knew our family quite well. Still, in October 2015 we had an independent hearing eval at the recommendation of our new pediatrician and it looked really good, just a tad below normal. Yippee! Two weeks later in Disney World (you just have to try Disney for Halloween!) he was about 10 feet ahead of us and we were trying to whisper something to each other & he turned around and asked about it. This validated (at least to me) that he didn’t have any issues.
Then in January of 2016 we got a letter stating he failed his hearing eval at school (again – this makes about 3 fails now). I, being a concerned mother, totally ignored the letter. We JUST had an eval in October plus he could hear me 10 feet away in front of the the Tomorrowland Speedway at Disney World’s Magic Kingdom. I had myself convinced this meant he was fine. The a few weeks later Mrs. Schmidt voiced some concerns. Well, sh*t. She was part of my safety net of “there’s nothing to worry about”.
We first went to an ENT hearing specialist at Lurie’s Children’s Hospital in Chicago. He failed that hearing test with flying colors. They were almost insisting Owen didn’t walk out the door unless we ordered hearing aids. Again, like a totally concerned mother, I was not at this appointment. No way were we dropping two grand without more research. (Oh, and if you didn’t know insurance DOES NOT cover hearing aids). We had another ENT consult to evaluate for any structural issues or possible infections that could be the cause of the failed exam. Alas, there was nothing amiss. We then drove up to Children’s Hospital of Wisconsin (CHW) for our last ENT consult. There was no mistaking that he really had issues and would earn bilateral hearing aids. This was now THREE hearing tests in about 3 weeks so Owen had a sense that he might need hearing aids. Thankfully he took it all in stride.
In pure Owen fashion – he picked RED for both the hearing aid (behind the ear piece) and the molds (what you see in the ear). We ordered them in the late spring and picked them up over the summer of 2016. 
Between the fitting & picking them up I really started to see how bad his hearing was, because now he had let his guard down. Maybe by being kid #3 I had turned into a predictable mom – but most the time he had no idea what we were saying, he just guessed at the answer. Will admit, he was pretty darn good at it.
With hearing aids, the difference is shocking. It’s not actually quiet in the house but you can certainly hear yourself think (at times). You would be shocked on how much lower he listens to almost everything (TV, iPad). We had fun in the beginning having him stand with his back to us as we whispered questions from far away & he could answer them.
At the fitting I was taught how to put them in and out. I wasn’t a master at it right off the bat and even had issues with poking him with my fingernails. Pretty certain that is the reason that within about two weeks he mastered being able to put them on and off himself.
Why did he lose his hearing?
So, why the hearing loss? Most family & friends (and even us) assumed that it was connected to his congenital heart defect. Not the case.
That was the overlying consensus from both ENT and Cardiology. It could have been a virus when he was born and then had a delayed hearing loss. He was NOT born with the hearing loss because he has no delayed speech. His articulation is amazing, which means at some point he had hearing (cause he heard all those letter sounds!). It also could have been a virus in preschool (we started noticing the hearing loss around preschool age 4). We will really never know (unless science finds some answers in the future) but very happy we are able to help him now.
My nephew has hearing loss from a virus (ear infection). The journey was very similar to yours. Thanks for sharing this. I will be sharing with my sister.
I’m sure this journey has been difficult! Thank you for sharing your experience.
So glad he has the help he needs and the friends are excited about his new hearing aid. My daughter was born deaf in one ear and sure does NOT stop her – she is actually too chatty. haha!
We were told last year at a checkup that HOH kids tend to talk more cause then they can control the conversation and not have to worry about missing any information. Found that interesting!
I can’t believe that insurance doesn’t cover hearing aids, especially for children. What an outrage! I’m glad you have some answers and that he seems to be adjusting well. Best of luck!
Although are son had numerous ear infections when he was little and it lead to twice having to have the surgery to get drainage tubes put in he fortunately has no hearing issues other than the selective one you mention.
Thank goodness! My older sons had multiple infections as well and thankfully no issues.
Tiffany thank you so much for sharing your story! I was just thinking about this with my grandson that lives with me..
Grandpa had it nailed – he really was convinced there was an issue right from the get-go.
Thanks for sharing and spreading awareness. How is it possible that insurance doesn’t cover hearing aids? Is that true of all insurance companies? That just doesn’t seem right!
Actually, JUST this year this changed. We were pleasantly surprised but had bought TWO sets out of pocket already. Once he hits 18 we have to start paying again, and they only pay once every three years, but it’s a start!
Wow, I like his cool red hearing aids! I’m glad it has opened up a whole new world for him!
Interesting! Very informative. Good read!
What a journey! Glad he has adjusted so well and is not missing anything now!
It’s such a shame that insurance doesn’t cover hearing aids. That’s crazy! I’m glad you were able to get him what he needed. I remember my son telling me he couldn’t see out of one of his eyes! I didn’t want to believe it, but I knew he had an eye condition that could suddenly worsen. Thankfully he’s got corrective lenses and has the ability to see.
Thankfully since then, insurance HAS changed (if you’re under 18) so they were covered for the next pair! Saved thousands!
Very good article – I had hearing loss, too, but nothing was done until I was an adult and a lot of damage was done that couldn’t be improved. It’s great that you pursued the issue while he’s still young.
This is a great story that raises awareness. I don’t know that I’ve really given childhood hearing loss much thought, so I’m glad I read this. I love that he got to pick the colors for his hearing aid! I’m glad there is so much technology that can help.
I have had hearing loss since my early 40’s and wear hearing aids in both ears. My hearing has gotten progressively worse and I struggle at work and have gotten good at faking it. That is why I love writing so much. One of my first blog posts is called coping with hearing loss.
I’ll check out your post! Hearing loss is more prevalent than I thought!
I wonder why insurance does not cover hearing aids. It seems rather silly!
I’m so impressed with the progress that has been made in medical devices. Hearing aids that can connect to your phone?!? How impressive!
It always seems so disturbing that aids are not covered under most insurance. We fought to get my Dad one to no avail during his last years. So glad your son is doing well with his…and the red is cool!
I’m glad you were able to get it all sorted out. My sister’s newborn failed his first hearing test and just barely passed his second one, so she doesn’t seem concerned, but I’m sure it is something they will need to keep an eye on as he gets older.
Thank you for sharing your story! I Am sure it will help a patent just starting down this road, recognize the signs a bit sooner.
Very informative post. Good to know the issues to watch for. And so glad Owen can hear better now!