Hearing Loss: An Almost-Missed Diagnosis

June 5, 2017 adopting a boy, adopting again, Brandie, hearing aids, hearing loss, undiagnosed SN, waiting for referral 4 Comments

In late August 2014, I loaded up my three children and drove an hour to hand deliver our completed dossier to my adoption agency. After the months of meetings, paper chasing, notarizing, and certifying documents, I would only let those precious papers leave the firm grip of my fingers if they were placed directly in the hands of my adoption consultant. I sat with her as she looked over every document. Oh, the patience she had for me! When the dossier was deemed perfect, she looked my oldest son in the eye and said, “You will probably know who your little brother will be by Halloween.”

For the next few weeks, I not-so-patiently waited for “the call.”
I checked email every two minutes.
I force closed the email app because I believed it was glitchy.
I obsessively checked for voice mails that weren’t there.
And I looked at pictures of kids on our agency’s waiting child page.

Was this one our boy?
Would this be the baby who joined our family?

And when I saw a new post advocating for three boys on their Facebook page, I sobbed to my mother. Why weren’t we seeing these files? I was a crazy soon-to-be-mama again, and logic was not a part of my vocabulary. I requested the file of one of the boys (whose age would exceed the specifications in our home study), but it didn’t matter. We could always update the home study, right?

His advocacy name was Patrick, and he was missing an ear. After some fast and furious research about microtia, my husband and I were totally on board with the diagnosis of hearing loss. What ultimately made us hesitate though, was a skin condition he had, one that we had actually checked “yes” on our medical conditions checklist. For whatever reason, we just didn’t feel comfortable moving forward, and we returned the file to our agency. I had a great sense of peace about it. Patrick was simply not our son. (I am happy to say that he does have someone he calls mama now. His family committed to adopting him not long after we made our decision.)

Fast forward a year later. September 2015. We had already traveled to China once to adopt our baby boy whose referral came merely weeks after we reviewed Patrick’s file, and we were in process to adopt again. This time, our kiddo waiting for us in China was a seven month old boy with a heart condition. This was a medical need we had previously not considered until we saw his little face on our agency’s waiting child page.

We sent in our Letter of Intent to adopt him and spent the next few months researching all things heart-related. Our little guy had quite a few medical surprises in store for us, which I shared about in a previous post. A big one that we could have easily missed was his hearing loss.

Caston came to us with an ear infection that rarely left. With every round of antibiotics came a very short lived relief, but the infection was back within days of finishing medication. Sometimes, the antibiotic didn’t even touch it. The poor guy was so used to the feeling of fullness and pain that he never once cried to let us know something was going on in his ears. He never ran a fever either, which is why we would sometimes go in to see another unrelated specialist and walk out with yet another ear infection diagnosis. On a “good” infection-free day, he still had fluid behind his eardrums.

Caston’s first ENT suggested ear tubes, which we combined with a few other procedures to help diagnose some other issues. On the day of surgery, both ears were infected. Our little guy couldn’t catch a break. The surgery went smoothly, and he was recovering nicely. On day one post-op, he picked up a musical toy and held it directly up to his right ear. How on earth can he stand that? I wondered.

And then it dawned on me. What if he couldn’t hear it before? I immediately messaged our ENT about hearing loss through the patient portal.

We stuck with our first ENT for a total of 6 months. His audiologists performed multiple hearing tests in the audiometric booths and continually dismissed my concerns of hearing loss. “He had a bad day,” they said, or “He’s fatigued. We’ll try again in a few weeks.” The booth tests were scary for him. He cried because he was terrified of the noisy stuffed animals that were supposed to be a positive reinforcement for him looking in the direction of sound. His fear response typically kicked in before we even started the test.

Honestly, there was no big glaring warning that would have led anyone to believe that he couldn’t hear. It was simply… a gut feeling. Several doctors as well as friends and family all pointed out, “But he can hear! Look, he’s dancing to the music.” It was true. He could definitely hear. Even though he wasn’t forming words, he was absolutely mimicking our inflections and intonations. We knew when he was “saying” things like thank you through the rise and fall of his voice as he softly sighed, “HUH-huh.” And this kid could hum any tune we sang to him, even on key! Our ENT refused to discuss a sedated ABR (an auditory brainstem response test that measures how a person’s hearing nerve responds to different sounds and frequencies). I was frustrated, as this could have been included in his first surgery for ear tubes.

At our final visit with that particular ENT, I posed the question, “So what do we do, then, if he continues to fail the hearing tests in the sound booth?” His response was, “Well, that’s a good question.” I wanted to scream! Instead, I got referrals from two other trusted doctors and from an informal poll at moms’ group one morning, and from there, I scheduled an appointment with a new ENT.

At our first meeting with the new ENT, I explained my frustrations, and after he examined Caston, he agreed that he needed to have a sedated ABR. It would be performed when Caston got his ear tubes replaced several weeks later.

The tube replacement was quick and easy. The ENT was finished in about 15 minutes. The ABR took an additional ninety minutes. After she finished, the audiologist came out and confirmed what I had suspected: Caston has mild bilateral conductive hearing loss. He “misses” the highest and lowest pitches, and while he can hear the rest, it is likely very muffled. To him it probably sounds like we’re talking with our hands clamped over our mouths.

I wanted to cry tears of relief that we finally had conclusive answers after nine months of questions. And I wanted to cry because in the end, I was right. He couldn’t hear well. One of the few times in my life, I was praying I had been wrong.

It wasn’t until we were at the audiologists’ office a few weeks later for a hearing aid fitting that this all sunk in. When she began discussing options for the future such as FM systems (a microphone that works in conjuction with Caston’s hearing aids) to use when he’s in school, it hit me. This is forever. He will always have hearing aids. He will always need accommodations. And in that moment, I remembered Patrick, the little boy who truly made us first consider that possibility of parenting a child with hearing loss.

How fortunate were we that two and a half years ago God had already been preparing our hearts for this diagnosis.

A few weeks later, Caston’s hearing aids arrived. We went in for him to try them on and for me to learn how to use them and care for them. You know the viral Facebook videos showing kids reacting to their mothers’ voices for the first time after putting in the hearing aids? It was exactly like that. Except for a few minor details:

• Screaming as if we were severing an appendage.
• Snot free-flowing and hanging from Caston’s nose.
• Full body tantrum while clawing at his ears.
• A sweaty, disheveled mother trying to restrain aforementioned child.
• A two year old sibling in the room demanding repeatedly that the audiologist write the letter A on a piece of paper.
• My cell phone blowing up because my older kids were arriving home and trying to contact me.

There was indeed crying, but there were most definitely not tears of joy. Thankfully, this was not captured on video to relive over and over.

I spent the 30 minute drive home watching the rear view mirror and gently reminding Caston to leave the hearing aids alone. Which was super successful. I only pulled over three times. We spent the next couple of days watching him like a hawk. He was constantly touching his new hearing aids and pulling at the tubing. On a drive home from a baseball game, he somehow pulled one aid out, removed it from his “ear suspenders” (cord that attaches to his shirt so that he can’t lose his hearing aids), and disassembled it.

(I have since learned through the help of others in a hearing loss Facebook group that most people don’t wear their aids in the car. The car and road noise is simply too much.)

Caston has had his hearing aids for almost two months now. We have both learned a lot. He has learned that he is not allowed to remove them. Only Mommy or Daddy can take them out. He has learned to let us know when environments are too loud for him. He points to his hearing aid and signs the word “out.” I learned after I put them in my own ears that the amplification can be somewhat overwhelming. Not only does he hear my voice more loudly and clearly, he hears absolutely everything else that’s going on too. The hum of the air conditioning system. The screechy squeak of the trampoline springs. The patter of other people’s feet running through the house. The tumble of clothes in the dryer. I’ve learned to read his cues. When he starts to get fussy, I ask if he wants the hearing aids out.

I also learned recently to keep spare hearing aid batteries in my purse. We showed up to speech therapy last week with only one functioning hearing aid. Total rookie move!

We are already in process of getting an FM system for him so that we can more effectively focus on speech therapy. In a house with five kids (and often extras!), Caston needs the ability to sometimes just hear his dad or me so that he can pick up on all the word and letter sounds he’s been missing for over two years. We are working with a speech therapist through our county’s early intervention program at home and with a speech therapist at our children’s hospital as well.

We are already discussing his upcoming evaluation and enrollment in our county’s integrated preschool when he turns three. The preschool combines typically developing kiddos in a classroom with kiddos with various special needs, and they offer the speech services and therapy that Caston will continue to need as he develops language.

In all likelihood, Caston will also need surgery to improve his soft palate function. Even after a couple of months of being aided, he’s still not attempting to produce many of the letter sounds, so speech therapy will be a routine part of our lives indefinitely.

While parenting a child with hearing loss isn’t an avenue we actively decided to pursue, I believe we are now taking it in stride. I remember the feeling of being totally overwhelmed on the day we got his hearing aids. I rolled the double stroller out of the audiologist’s office with two cranky children and a bag full of unfamiliar hearing aid necessities. After only a couple of months, these little tools and accessories are just a norm. Caston doesn’t fight me anymore when I put his aids in. In fact, he sometimes “asks” for them by plugging his ears with his thumbs as if to tell me, “Hey, Mom! My ears aren’t working!” Overall, we are all doing really well with our new adjustments.

Some things I’d like you to know if you are concerned your child might have hearing loss:

• Do not allow specialists to dismiss your concerns. Sometimes your gut feeling holds more value than a degree hanging on a wall. You are your child’s best advocate. Even if you are wrong in the end, it’s ok. Having a conclusive diagnosis now is better than always wondering if you should have pushed harder.

• Sign, sign, sign. This applies to not only children with hearing loss, but for all adopted children whose first language is different from yours. We started out by watching Baby Signing Time on YouTube. These videos combine sign language with songs and explanations that seemed to stick with my kids. Get the whole family involved! The ability for your new child to communicate with his family is imperative in easing frustrations for you and for him. Another great resource is Baby Sign Language Dictionary. I keep this one on the home screen of my phone for quick reference.

• Check out the Parents of Hearing Impaired Children Facebook group. This is an excellent place to ask questions about procedures, equipment, or anything related to hearing impairment.

4 responses to “Hearing Loss: An Almost-Missed Diagnosis”

  1. Drayer says:

    Your story is so much like ours, right down to the ENT telling us that our son could hear even though something just didn’t seem right. An ENT switch, a sedated ABR, and then we knew the truth. Trust your gut, mama bears! Blessings!

  2. Lisa says:

    Bravo Mama for catching this!!!! 🙂 I have five kids…2 bio and 3 from China. My second bio son, now close to 19 had hearing loss similar to your son in the mild to moderate range. He wore hearing aids in both ears..he couldn’t hear a lot. In my sons case they told me to get ear tubes..I refused. He only had one minor ear infection once. I was told my son would be deaf if I didn’t have tubes put in, I still refused. I knew my son did not have fluid in his ears, but instead felt he had a bone in his ear that was blocking sound..as his ear canals were small. He also has bad allergies and sinus infections that took his hearing loss to a point that he was close to deaf at times. Otherwise if he wasn’t sick, his hearing loss stayed identical with zero fluctuations in test results over years and years and years. Finally, just as I had suspected and insisted to all the audiologists and ENT’s for way over a decade, he no longer is hearing impaired at all!!!! He is cured, his ear canals got bigger, and the bone as he grew, moved. He has perfect hearing. 100 %. And wow were all the doctors surprised!!! Ha ha! Just goes to show, Mom does know best! I even chose to pull him from regular school and homeschool him for nine years. He even did his senior year in 3 months and graduated Early with nearly a 3.7 GPA. This is the same kid who was a low D student!! God is good!!

  3. Denise Dunfee says:

    Thank You Brandie for your article on Caston! He is a super little man! God knew just the right family to put him with! You are doing a fantastic job advocating for your children! Thank you for sharing this article! I’m sure it will help others! And you will be continuing to advocate through his school years as well! Continue to stay strong!

  4. Abby Hardey says:

    Thank you for sharing your story. It is an eye opener for everyone who has little kids. Parents or guardians need to be very observant with the little ones so we can help them especially when it comes to hearing problems. It can be missed that easy! I think it would be of big help if we go to a Professional to let our child undergo hearing test early.

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