My child’s loss of hearing became my source of strength.

When my first son was almost two years old, we were shocked to find out he had hearing loss. The diagnosis that started this chain of effects came about in an unlikely way. My sister-in-law, who is child development specialist, asked if she could practice performing a hearing screening on our son.  This screening was an otoacoustic emissions test and results are pass/fail based on a hearing loss of 25-30 dB. My son continuously failed. We were a little surprised, but had hoped it was just her learning curve. We decided to follow up with our pediatrician. I went to see him for my son’s two year well baby check the following week. Just as a precautionary measure, he referred me to an audiologist, but assured me he felt his hearing was fine.

Our first trip to the audiologist is a little hazy in my mind. The news I received that day overshadowed all the testing we did. What I do know is we did a visual reinforcement audiometry which involved us sitting in a soundproof booth. Inside it has speakers on each side of us and when they would emit a sound, my son would look toward the speaker it came from. It’s a basic, but very effective test. I didn’t feel as if were that effective that day, but in hindsight I can see how accurate it was. When we emerged from the booth, the audiologist told us he believed our son had a moderate bilateral (both ears) sensorineural (abnormality of the hair cells in the ear) hearing loss. And that is where my mind goes blank. I vaguely remember discussing further testing and needing hearing aids and then we left. I put my sweet little boy into his carseat, kissed his chubby cheeks, got into the driver’s seat and cried. I cried long and hard for all the opportunities I felt my son was going to miss out on, for the burden he would have to bear for being different, I cried for the loss of my perfect child. When  I got home and shared the news with my husband, we cried together.

The news undoubtedly shook us. We were blindsided because our son was talking, he met all his milestones and seemed in all senses to be a perfectly normal two year old. His speech had a few quirks- but what two year old speaks fluently? In light of the diagnosis we still held hope that they were wrong. I decided to schedule further testing even though it required sedating him. The thought of sedation terrified me, but I needed answers, firm answers that I could see on paper and hold in my hands. I needed to know without a doubt that this was our new life. I made the call and scheduled his next test.

In the meantime we decided to get him aided just in case they were right. Unlike our first trip the audiologist, the day we went in for his fitting will forever be engrained in my mind. My son was standing with his back to me when the audiologist put in his first hearing aid. I waited, holding my breath, for some miraculous moment that would make this all real. I nervously scratched my jeans and his head whipped around and looked at my leg. The tears began to fall again. The audiologist rustled his shirt and my son’s head whipped around again to look at him. I could see the immediate change in what he could hear- I could SEE my son hearing. We walked outside to leave and my car loving child screamed in excitement when he heard the cars racing by! As further proof, that night at dinner we could hear a siren in the distance and my child ran to the window fully expecting to see a fire truck in front of the house. He had never heard one without seeing one.

The test we had scheduled is called an ABR or auditory brainstem response. The child is sedated, electrodes are placed on the head, and brain wave activity in response to sound is recorded. ABR can detect damage to the cochlea, the auditory nerve and the auditory pathways in the stem of the brain. This is what would give us the conclusive extent of his hearing loss. The day came and we checked into the hospital. To start with, waking a toddler at 5am, not feeding him breakfast and dragging him across town in the snow is not a great way to start the day. Throw in an IV, loopy drugs and ineffective sedatives and it’s downright miserable. When the sedatives finally kicked in and testing was underway I thought we were in the clear but he managed to wake up half way through and we had to start all over again. My poor guy. What a rough day for a two year old! After we finished with the ABR, he was taken in for a CT to check for physical abnormalities in the inner ear and then an ultrasound of his kidneys. Apparently the inner ear and kidneys develop at the same time in utero, thus a problem with one can mean a problem with the other.

Results came about a week later. His hearing loss was about what the audiologist had determined, no physical abnormalities and healthy kidneys. What did all this mean? His hearing loss was mild to moderate, meaning he could hear average conversation levels, they just sounded like more of a whisper to him. This explained how he was able to pick up so much speech and by using visual cues and teaching himself to read lips, he sailed by without anyone noticing that he had an issue.

An amazing thing happened as we were listening to all this, I no longer felt sad or scared for my son. I was proud and astounded by all his accomplishments at such a young age. For every word he learned, he had to work so much harder than the average child. I didn’t see the challenges in store for him, I saw his strength and determination to get what he wants from life. I saw a glowing, happy child that has such a bright future regardless of the challenges he’s presented with. I saw my two year old son, happy and hearing. What more could a mother ask for?


Richelle Killian is a wife and mother of two. She is the owner of Essential Esthetics by Richelle and the Fashion and Beauty Expert for Domesticating in High Heels.

7 Comments

  1.  
    Carol Metzger

    My son Ken is Richelle’s father and Ethan is his first grandson and my first great-grandson. I have only seen Ethan twice. We saw him at age two and we all thought he was just slow in
    talking as did Richelle. He is so beautiful and loving and he did call us gampa and gammy which we treasure. About a month later Richelle called to tell us what what was going on. My heart breaks for them and Ethan. With our computers we can see and talk to each other see he is a strong, beautiful little boy and I love him with all my heart! So proud of his parents for how they went forward and solved their problem!

  2. Richelle, awesome story!!! I can sooo identify with you. “The perfect child,’ its hard when we learn about what is going wrong. But I am so glad that you are finding strength cause in that he will learn from you. You are a great role model and I thank you for sharing!

    Jamie

  3. Richelle, this is a great story of your son’s hearing. Very amazing and touching! My brother has hearing loss and we didn’t know for years as well. By the time it was effecting school, he was too proud to wear his hearing aids. Kudos to your son for not feeling any different.
    Jen S´s last blog ..2010\May\25 (by Eye-Fi) My ComLuv Profile

  4. Thank you so much for posting this, we are currently in the same boat. My son is 2 years old and recently we saw a a few doctors about his speech delay and delay and many other skills. From there they sent us to a hearing doctor and did a hearing test, from there they determined he was lacking and sent us to audiologist. We too sat in the box as they made sounds go off and looked to see where he looked. It was heartbreaking to hear the sounds and not see him turning to see them. After the test they took pictures of the inside of the ear and some x-rays. A few weeks before had ruptured his ear drum in one of his many ear infections. When the pictures and xray came back they determined he had a massive amount of scar tissue built up in his right ear and that his left ear had a large amount of fluid in it. The test showed he had hearing loss in both ears and that his right ear was so damaged he couldn’t hear from it at all. :( I was upset to hear this but I didn’t react to it until much later.
    From there we began seeing speech therapist but he was kicked out because his skills had been 40% delayed and they wanted him to be 50% delayed. We now have to wait until he turns 3 to proceed with help for his speech.
    We are now waiting on the ENT doctors to get back, they are all deployed, sometime in late June so we can get his tubes surgery. They are going to put tubes in first to see if this will help him to hear better. As for now this is where we stand, just waiting.
    I’m trying to get seen asap because yesterday my son got out of the backyard while I was nursing my other son and he went off into the woods, I called for him several times but he could not hear me so my calls went unheard and I was panicking to find him. Thank goodness for the dogs of ours who lead me to him.

  5.  
    Aunt Michelle

    Hi Richelle,
    I don’t know what to say about all this for you and your family except your article is wonderful and sad and hopeful. It is disheartning to have this happen but you have handled it very well and I am proud of you and Ethan for all the hurdles and now he can really enjoy his life. You have grown up to be such a wonderful mom and a beautiful young lady (I saw your photos). You are lucky to have the family that you do but I KNOW it doesn’t come easy and you have worked very hard to get it that way. Be proud of yourself and keep your strength going!
    Love you,
    Aunt Michelle

  6.  
    Richelle

    Thank you all for your touching responses. I am more than happy to share my struggles if it could make just one day easier for another family.

    VickiRae- Have you looked into PIC? I know they are a little overloaded but they could steer you in the right direction. And in the meantime, while you wait for his tube placement, you should be able to get hearing aids for him at no charge through the state. I’ll gather more info and email it to you. Let me know if you need anything!

  7. Richelle, thank you so so so much. Right now we are stand still and shouting words to him just seems so rude and makes me feel like a bad mommy, but it’s the only way he seems to really hear me sometimes. As for PIC, yep we have spoken with them and been evaluated by them a few times but he is just under the requirements of the development delay so they cannot help him. They have given us some information to work with the school district once he turns 3, but that seems so far away from now.

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