Hearing loss in 15-month-old: what now?

[Swandira]

Hi, all! So I have a 15-month-old, third of three children, and I noticed that he talks less than the other two did at this age, so the pediatrician suggested a hearing eval. Sure enough, he has some hearing loss -- he seems to notice only sounds at 45 decibels or higher, while normal for this age is to hear even 15 decibels or less. That sounds like pretty significant hearing loss to me -- am I wrong? I don't know any other kids with hearing loss, so I have no context.

He's only ever had one ear infection (months ago), and he doesn't have abnormal amounts of fluid in his ears, so I imagine it's not a quick fix like the tubes-in-the-ears thing.

What would have caused this? He passed his newborn hearing screen, and he's otherwise developmentally normal. He's very bright and alert, with excellent gross and fine motor skills and nothing that I recognize as being a sign of SPD or ASD. Actually, I think he's even within the normal range for speech at his age, but on the lower end of normal. He's never been sick except for the one cold/ear infection. I imagine something that would damage your inner ear would be a pretty noticeable illness, right? Could the newborn hearing screen have just missed his reduced hearing? Maybe he's been like this all along?

What will probably happen? If you have a kid with a similar story, how did they treat it? What was the outcome?

Thanks for your stories and advice!

Nealy
mama to Thales (7), Lydia (4), and Odin (12/12/08)

[2boyzmama]

HI!

It's really late, and I'm nursing a baby, so I will give my long answer tomorrow. But I wanted to say a few things really quick:

1. It's GREAT that you noticed the speech and got his hearing tested so early, often it's not until much older that this type of loss is found!!

2. 45dB is considered "moderate", so it's not severe, but it's not something to ignore.

3. Yes, a baby can pass a newborn hearing screen and still have hearing loss. It's just a screen.

4. Not all hearing loss is caused by illness, so although one ear infection could cause loss, it's also possible there's another cause. Do you know if they said the words "conductive" "sensorineural" or "mixed"? Those are important words when understanding hearing loss.

I'll write more tomorrow

[2boyzmama]

Okay, I have some more time this morning. Here's a good basic link to explanations about hearing loss:

http://www.babyhearing.org/hearingam.../audiogram.asp

http://www.raisingdeafkids.org/heari...ing/audiogram/

And here's a picture of what's called a "speech banana"
http://www.npcsd.mhrcc.org/local/hig...ech_banana.htm

Basically, hearing is tested across different frequencies and at different decibels. The results are plotted on a graph. Hearing loss is described in terms of "mild" "moderate" "severe" and "profound", not as percentages like you might sometimes hear (I have a coworker who keeps saying her daughter has 40% hearing loss...what does that mean? I keep asking her what frequencies and decibels and she doesn't know)

Hearing loss can be conductive, sensorineural, or mixed (a combination). My experience is with mild-moderate conductive loss.

The "speech banana" shows where the speech sounds most often occur in frequency and decibels. For example, "m" "d" "b" all occur at about 250-500Hz and 40dB. So if your child has a hearing loss of 45dB at 250-500Hz, he will not be able to hear those speech sounds correctly.

Hearing loss is hard to notice because kids are very perceptive, and very in-tune with their environment. So a child with a moderate or even a severe loss will still turn when someone walks in the room (they felt the vibrations), they'll still respond to their name (they did hear you talking, and they eventually learn to differentiate their name from other speech sounds), they'll still startle when a pan gets dropped in the kitchen. So often parents have no clue that there's an issue until speech is delayed. And often pediatricians encourage parents to "wait a bit longer" before worrying about a speech delay, especially in a boy. So it's great that you found this so early!! If a hearing loss is missed on the newborn screen, it's usually not found until preschool or kindergarten screening!

SO...here's my story then. My son has mild-moderate fluctuating conductive hearing loss, worse in his left ear than his right, and primarily at low frequencies (250, 500, 1000). His is caused by malformed external ears, malformed ear canals, malformed ear drums, fluid build-up from a cleft palate, and history of many severe ear infections. All of that is caused by a chromosomal deletion he has called Velocardiofacial Syndrome or DiGeorge Syndrome.

He failed his newborn hearing screen, but at the time we were frankly much more concerned with other health issues he had (breathing, feeding, failure to thrive, etc) And his external ears were folded flat against his head, so I was assured that it would just take time for the fluid to work its way out. We didn't know at the time that his ear canals were malformed also. Around 6 months old was when some of his other problems started stabilizing, and I started asking about his ears. They had "opened" by then, and we could tell that his canals weren't normal. Not a single dr could see in his ears. His response to sound was very inconsistent, sometimes he seemed hyperresponsive, sometimes he seemed as if he heard literally nothing. Finally at 10 months a cat scan was done of his ears and we discovered *severe* infection rampant in his inner ear and mastoid bone. So for a while we were focussed on getting the infection under control, that took months and finally led to a PICC line (an uber-IV that delivered antibiotics directly to his heart). He was on home infusions on his PICC line for 4 weeks straight.

Once we got the infections under control, and got referred to the right specialist, we started paying attention to his hearing. He was 16 months old by then, and just starting to respond to sound, also just starting to babble some. Unfortunately he isn't a good candidate for a hearing aid because of the variability of his hearing loss (it is sometimes "normal" at 20 dB, sometimes as bad as 50 dB) and also because of his malformations (it would be hard to fit an aid to his ears and his ear canals)

He has had a few things done to his ears, he had tubes put in (very hard to do because of his canals being so small) he had the infection cleaned out, and we're monitoring his ear canal growth to determine whether we're going to do a canaloplasty to enlarge his canals. For now he's pretty stable, he's only had 3 (or 4?) infections since the PICC line was taken out 20 months ago. He's in speech therapy once a week privately and once a week at school. We use ASL with him because his expressive speech is so delayed (he also has Apraxia, which is a neurological condition that effects his speech, it will likely be years before he won't need to rely on ASL anymroe) He attends a public school with an interpreter. His teacher wears a microphone and there's a wall-mounted FM system in the classroom so the teacher's speech sounds are amplified just a bit so he doesn't have to work so hard to differentiate speech sounds from environmental sounds.

SO...that's my son's story.

[Swandira]

Wow. You've had quite a journey with your little guy! Did you happen to know ASL before his birth, or did you use baby-signing books, or some other way?

The links were spectacularly helpful. Thanks! And it's good to know that we've caught this relatively early. I hear that with all sorts of special needs kids, earlier intervention almost always has much better results. I was thinking that I had let it go too long! Now that I know, I can easily see the signs. He didn't know his dad had come in the front door this evening. At this age, I now remember how the other two would run up to meet him at the door, but Odin always just looks gleefully surprised when he appears in the dining room. I'm pretty sure I'd never have noticed the speech thing if this had been my first baby, because he does use speech and he does imitate sounds; he just doesn't do it a lot, and it's not very consistent. I would probably have just assumed that was normal-ish. I'm so glad I had the context to know something was off about his language use.

I'm still waiting to hear from my pediatrician, which most likely means she's still waiting to see the report from the audiologist. I'm getting a little impatient. If I don't hear from her by tomorrow afternoon (72 hours seems generous to me), I'm calling the audiologist's office and nagging, because my poor baby isn't getting any less hearing impaired while they procrastinate filing papers. In the meantime, I ordered him one of those Signing Time DVDs to augment my pathetic knowledge of ASL. Odin's done great with the four signs I knew to teach him already. Even if he won't need ASL long term, it can stimulate the language center of his brain while we wait for a diagnosis.

Anyway, thanks so much for your story and for the links and other info. I'll post more info (and more questions, I'm sure!) when I have an update.

Nealy
mama to T (7), L (4), and O (12/12/08)

[PatchChild]

That's a fairly similar level of loss to my son, though he was diagnosed at birth. He wears hearing aids now and will NOT stop talking. It's a level that is very correctable, but if you search around for a hearing loss simulator, you'll be shocked at how much of a loss it is.

Good luck with the follow-up care.

[laohaire]

Yes, you caught it early! My parents didn't catch my moderate-to-severe hearing loss until I was 30 months old.

[~cassie~]

I don't have much to add, but I'm glad you found the loss relatively early. My son's hearing loss was in the severe to profound range and had to have implants to give him hearing.

Love the Signing Time DVD's, we have learned so much from them! My 2 1/2 yr old is able to now sign almost all of his alphabet-from memory, knows several hundred, if not a few thousand, of signs. Signing provided a bridge to spoken language for him, it was awesome. You may also want to look into cued speech. It is confusing to me and we are not doing it, but I wish we had done it at the beginning b/c it is a very wonderful tool and helps them understand language so much more!