My Baby Boy & Hearing Loss

After months of testing and waiting, we finally got Alvy’s hearing aids on the Monday before Christmas. He’s been in them about 10 days now and so far everything is going well. When the audiologist put them in for the first time he responded immediately by squealing and flapping his arms up and down, the universal seven month old version of, “Oh awesome! I like this!”

He wears them most of the day, except for when he’s in the car, sleeping or nursing. For the most part, he leaves them alone and has only tried to eat them a couple of times.

They came with a whole goody bag of stuff, including a small stuffed animal who wears a pair of hearing aids that look exactly like Alvy’s. It has been great for teaching Evie about Alvy’s “hee-eeing aids” (as she calls them) and has reduced her two year old curiosity to a minimum.

IMG_2534 For those of you who are new to my blog or missed the original post, we first discovered Alvy’s hearing problem during the newborn screening test at the hospital when he was just a day old. When they first rolled the machine for the newborn screening in I thought it was a formality. My baby was perfect, he didn’t need this silly test.

When the technician told us he failed my heart sank into my stomach, I felt sick.

After four failed tests in the hospital we were referred to an audiologist…and told not to worry. So, I didn’t.

ABR number two

When Alvy was a month old we went to the audiologist for a click auditory brainstem response (ABR). After the test was over the audiologist came into the testing room with a big stack of papers and a folder, that’s when we knew for sure.

She explained the extent of the loss and then further explained that since he wouldn’t be still while the test was in progress, it would need to be repeated for us to get a clear picture of exactly what his hearing loss looked like.

When he was five months old we took him to the hospital for a second ABR, this time performed under sedation. That day we had an official diagnosis of mild sensorineural hearing loss, a type of loss similar to the deterioration adults with normal hearing will experience over the course of their lifetime. Hearing aids were our future.

I want to explain to everyone what Alvy’s hearing loss really is. He can hear most things except high frequency sounds which he only hears at a whisper – this translates to English language sounds like S, F, TH and means that without hearing aids his speech will not develop normally.

A graph of Alvy's hearing loss. Everything below the line he can hear, everything above he can't

A graph of Alvy’s hearing loss. Everything below the line he can hear, everything above he can’t.

Unlike conductive hearing loss which can be corrected, sensorineural hearing loss will never get better. For now, the loss is mild but that doesn’t mean it can’t and won’t get worse in the future as his hearing naturally deteriorates.

Like glasses for people who have trouble seeing, the hearing aids are adjusted to amplify only those specific frequencies that he needs help with so as his hearing changes the aids will need to be adjusted. This means we will be visiting the audiologist about every six months for retesting and every couple of months to have his ear molds refitted as he grows.

20140102_111754 As far as our future goes, we really don’t know. He may need speech therapy but that will all depend on how well he responds to the hearing aids. We caught it early but getting the aids took longer than the audiologist would have liked due to circumstances beyond our control (go ahead and ask me how I feel about the chloral hydrate shortage, I dare you).

At 35dB Alvy's hearing loss is on the high side of mild

At 35dB Alvy’s hearing loss is on the high side of mild

Alvy’s hearing and education will be a big part of our lives from here on out. We’ve already been introduced to Texas Hands and Voices (a non-profit group dedicated to helping families of kids with hearing problems) who conveniently have a playgroup every month for deaf and hard of hearing kids at a park just down the street from our house. Though he’s too young to play now, it will be good for our whole family to meet people who face similar challenges. Jason and I have also agreed that learning ASL will be extremely helpful as Alvy grows and we are introduced into the deaf and hard of hearing community.

How do I feel about all this? At first I was in a bit of denial but I’ve had several months to process it and to free myself from any guilt I had surrounding it. He has a mild disability and you know what? That’s okay. It is just one of the many things that make this little boy unique. It may not be exactly what we were expecting when we decided to have a second child but kids are great like that – constantly keeping you on your toes.

His hearing aids will make him different than all the “other kids” and that is something he will have to learn to manage. He has already shown us how strong he is and this minor disability will only make him stronger as he grows. I am so proud to be his mom and am excited to watch him grow and become his own person, hearing aids and all.

9 comments

  1. I myself have a mild hearing loss.. I didn’t realize that it effects the f, th, and s’s. I had speech problems with those and had to do speech thearpy.. it was no biggie. I don’t hear low tones like whispers, tv low and
    I have trouble hearing with other noise in the background.. I had to go to hearing doctors all my life til I was 13 ish..I quit going though. I manage not to get hearing aids- but I miss out on a lot of what people say..I do a lot of huhs and what’s lol.. I hope everything goes ok for your son now and in the future!!

    1. Thanks Sarah! It’s great to hear the perspective of someone who has been though it! Since I do not have hearing issues it’s hard for me to imagine exactly how his world sounds. I often find myself thinking, “I wonder if he can hear that?” Of course with the hearing aids on he’s got bionic ears!

  2. Such a lovely post! Alvy’s hearing loss sounds a lot like my ex-partner’s. He only got his hearing aids when he was two years old, but he’s been wearing them ever since and they’ve been great for him, they make such a difference!
    He was able to teach me various tips to helping him get through life that little bit easier, such as not talking to him when I was behind him and avoiding noisy places because it was harder for him to hear if there was a lot of background noise.
    However having said that, modern hearing aids are seriously amazing and they continue to make incredible improvements to them. My partner got a set which could link in to bluetooth devices such as his phone so that he didn’t have to put the mobile to his ear and put up with awful feedback, and he could happily watch tv as loudly as he wanted while I read next to him because the noise only went to his hearing aids.
    Having a hearing impairment brings up an extra set of challenges, but with a loving family around him, I’m sure Alvy will do great. And you know what, sometimes it can even be an advantage! My ex-partner was the heaviest sleeper because of his hearing loss and it was always almost impossible to wake him. Which worked perfectly for me because I am a very active sleepwalker, and so I never disturbed his sleep.
    Good luck to your family and Alvy, I’m sure you’re going to rock that hearing impairment!! 🙂

    1. Since you mentioned the bit about the background noise I actually put them in my own ears to hear for myself and realized that the background noise is a real problem. That might explain why he freaked out the other night when we put them on in a noisy restaurant! Note to self… 🙂

      Thanks for sharing your tips, they will come in handy!

  3. Hi There! I’m a mom of a kiddo with a very similar to your little guy’s (except our son also has Down syndrome, and developmental delays due to infant seizures). Your story put me right back there when we were processing all that new information too!! Our son is now 15, and I am FAR from being an authority on deafness, but if there’s any way I can support you, or if you want to know what we’ve done to maximize his language and learning opportunities, please let me know!

    All the best,

    Gigi

    1. Thanks Gigi. Since we found out about his hearing loss several people have come forward with their own versions of a very similar story. I’m so glad to know there’s others out there who can help us out. I’m certainly concerned about his language development, the audiologist told us it’s a “wait and see” type of situation but being a type A, always plan for everything kind of girl I’d love to find out what you did, you can contact me at rocksonafencepost@gmail.com. Thank you so much for sharing your experience with me!

  4. What an amazing journey you are going through. I love how excited he was the first time he wore the hearing aids. Modern medical technology is outstanding! Thanks for sharing your story.

    1. You’re right medical technology is incredible! I can already tell a big difference in how he behaves when he’s wearing them. It’s obviously makes a big difference to him.

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