A dad that needs some feedback

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dada2cole

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I am the proud father of a beautiful 8 month boy with severe to profound hearing loss. My wife and I do not have hearing loss.

He was fitted with phonak naida HAs at 4 months and has been doing great. His speech therapist said he has "mastered" everything that an 8 month old should be doing and he is saying ma-ma. I will wisper his name from 20 feet away and turn his head to me!

We just had his behavioral test done and his audio gram with HAs on is:
35 db @ 250Hz
35 db @ 500Hz
50 db @ 1000Hz
55 db @ 2000Hz
65 db @ 4000Hz

His audiologist said that he would not be able produce understandable speech and that we need to strongly consider CIs.

So, my question is would his speech be fine, off a bit, off a lot, or really bad if we stuck with the HAs?

Any thoughts or feedback on CIs for his situation would be appreciated too.

Thank You.
 
Welcome!

Sounds like your boy is doing brilliantly with his HAs. Being able to hear his name whispered from 20 feet away is amazing!
 
If he can understand a whisper of his name from 20 feet with ha's I doubt he is in dire need of a CI
 
my advice is to download the speech banana on an audiogram. You will then be better able to determine which sounds your son would be able to detect based on his audiogram with his hearing aids. Keep in mind that because he can detect sound doesn't mean he will be able to produce it. Hope this helps. Remember, you are the best advocate for your child no matter the decision.
 
His hearing doesn't sound bad enough to even make him a candidate for CI...

If someone can hear that well without a hearing aid, they wouldn't even be considered to have more than a mild hearing loss at all in many cases! Granted, that's not equally reflective of hearing with HAs in terms of clarity/discrimination, but even still.

And audiograms in infants as young as him can often show artificially more severe losses than the infant actually has, at that.

And for that matter, people with MUCH worse hearing with HAs on speak perfectly fine. Your audi was either being ignorant or dishonest, there.

It sounds like your audiologist is trying to pressure you into surgery with neither complete nor accurate information. I would strongly suggest asking deaf/hoh people in your area for audiologist recommendations and seeing an alternate audi for a second opinion.

Also: see Grendel's good suggestions, but my own to add to that would be definitely -not pursuing- a CI until you try stronger HAs and see how he progresses in terms of speech development over the next few months, and not without seriously considering the risks and alternatives.
 
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Hello, and welcome!

Your audi can likely provide far more info, but by matching the db levels you provided against a map of where speech sounds fall on an audiogram, it seems that your son has access to maybe a third, a bit more perhaps, of sounds in the English language. Mostly vowels. Roughly speaking, vowels provide perception -- when aided, your child can hear that a word is being spoken (or his name is being whispered, which is great!). Consonants, of which he may only have a handful (m, d, l, a couple of others ... seem to be in his range), are what provide meaning, discrimination.

Some deaf people with less access to sound than your son have developed oral skills and can produce speech sounds that are intelligible. Your audi may have meant that it would be difficult and require extensive intervention. But oral skills are just a part of spoken language, your child needs to comprehend as well as as express himself to truly have access to the language. He does need language quickly, those first two years is a critical window of language development. So, it seems you need to take some action quickly to fill the gap he has.

Some ideas if spoken language is your goal:
  • stay on your current path and consider his current HAs useful for perception and envi. sounds and develop his oral skills through directed learning and therapy over the years -- he will have expressive access to the language, but will rely on other means for receptive communication you'll need to develop, OR
  • work quickly towards improving that hearing level with better/different HAs to provide full access to speech sounds, OR
  • use CIs to provide full access to speech sounds (I've seen children with similar levels become candidates, but there's a lot beyond db levels that goes into determining this)

You can pursue a language your son currently has full access to:
  • learn sign language and incorporate it into his everyday life as a primary means of communication between you and him, and among family members/friends when around him, AND
  • provide an academic and social environment where sign is the primary means of communication

These aren't mutually exclusive, you can take any of the spoken language routes AND develop sign language to provide your son with multiple options for communicating with those around him now and in the future.
 
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If someone can hear that well without a hearing aid, they wouldn't even be considered to have more than a mild hearing loss at all in many cases! Granted, that's not equally reflective of hearing with HAs in terms of clarity/discrimination, but even still.

And audiograms in infants as young as him can often show artificially more severe losses than the infant actually has, at that.

And for that matter, people with MUCH worse hearing with HAs on speak perfectly fine. Your audi was either being ignorant or dishonest, there.

It sounds like your audiologist is trying to pressure you into surgery with neither complete nor accurate information. I would strongly suggest asking deaf/hoh people in your area for audiologist recommendations and seeing an alternate audi for a second opinion.

Also: see Grendel's good suggestions, but my own to add to that would be definitely -not pursuing- a CI until you try stronger HAs and see how he progresses in terms of speech development over the next few months, and not without seriously considering the risks and alternatives.
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Excellent post!!!!!! While the CI can be amazing, in some cases kids with "deaf" losses can do well with hearing aids. I really wouldn't panic. If your son is on par with speech for a baby his age, (which he wouldn't be if he had a deep profound "unaidable" loss) there's no reason to rush a decision to have CI. Remember until recently kids weren't eligable for CI until they were one or two.
 
:welcome: to AD!

I was able to develop speech and lipreading skills with a profound loss in this range:

110 db @ 250Hz
110 db @ 500Hz
120 db @ 1000Hz
x db @ 2000Hz
x db @ 4000Hz

No CIs

That's the ballpark range of my hearing loss if I remember correctly.

However, it really depends on the individual. Some deaf people with my degree of loss can communicate orally with hearing people without the need of CIs and some do not. Same for people who have hearing loss in your son's range.

That's why I strongly recommend having your son learn American Sign language to ensure that he doesnt get delayed in language development. AS for recommending CIs, it is not my place to do it since I know many people who have varying degree of success with CIs ranging from complete failure to complete success (based on their expectations).

Good luck!
 
I was also able to develop speech many years prior to my CI.

110 @ 500
110 @ 1000
115 @ 2000

I suppose it does depend on the child and how they do. But CI's aren't always the way forward. HA's can work very well but up to a point.
 
One thought that comes to mind, You can always do CI in future. However if you do CI now, can't go back to way it was, My thinking is best to take it slow and be sure instead of making a quick decision based on Audi which could be biased.
 
Some of the deaf were able to produce sufficient speech without the CI. Sure some of their speech may not have been perfect. But it was understandable and good enough to get by.
 
i would wait... seems to me a few months ago someone posted about a baby who needed one come to find out the baby really didn't. do your research but would hold off for a while.
 
Deb1hd said:
i would wait... seems to me a few months ago someone posted about a baby who needed one come to find out the baby really didn't. do your research but would hold off for a while.
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I think that was just the worry of some of the commenters when the child's mom was concerned that the level of her child's hearing loss wasn't being firmly defined. The doctors had not suggested CIs at all.

I don't think the parent of this child should wait a moment before ensuring he has access to full language.
 
Personally I'd wait because you say he seems pretty responsive to spoken language just now. The bit that deaf & hoh kids miss out on is "incidental language" all that overhearing of things that hearing children get when people aren't talking directly to them, but words are happening in their environment. If he's responding well to language close up then make sure he gets a lot of close language from a selection of different people, rhyme groups, singing groups, reading stories, etc. with sign support. Make sure the listening environment is as "clean" as possible, if you have other children, noisy pets, that sort of thing then take him somewhere you can get a good one to one "chat" going without the TV or music going in the background. If you are out somewhere as a family like a restaurant or cafe ask for music to be turned down or turned off so he can hear you talking, and never mind if they look at you like you are crazy talking to your baby. The more that children are able to see and hear conversation the more they realise what it is and what it is for, there is that 'lightbulb moment' that they realise people are moving their lips/hands for a purpose, and if they try to join in they might get something from it too.

There will be plenty more tests and evaluations to come and you can see how you think his language is progressing. In fact, maybe take him to a specialist CI assessment centre now and see what they think, get a number of opinions. Often HA audiologists will refer to the CI centre and the CI centre will say they don't take anyone who hasn't given hearing aids a really thorough trial - there's a lot of rejection at CI centres, this is just a first point of referral. They might recommend a change of hearing aids, they might say the CI is a possible option for him, they may say he's doing too well with hearing aids to be considered, they may do an MRI and find his ears aren't physically suitable, but better to have the opinion from an expert paediatric implant centre than wonder about it on the basis of a single comment from the HA audiologist. Then get another opinion! The more informed opinions you have the more you can come to your own decisions.

Try to meet more people in your situation and those who are down the line, what did they decide, why did they decide to go that way, would they have done anything differently? He's already making baby talk, that's a huge positive, my daughter didn't utter a syllable till she was nearly 2 years old.
 
Stick with hearing aids. They're considerably less invasive than cochlear implants, and they probably wouldn't add any benefit to your son if he's doing as well as you say with hearing aids. I would also strongly encourage you and your wife to begin learning sign language and start incorporating it into your daily life so that your child will always be able to have unrestricted access to language.

Another thing to keep in mind that hearing aids use your son's natural hearing whereas cochlear implants produce a limited, artificial simulation of sound. Also, there are no long-term studies on the health risks (if any) associated with someone growing from infant to late-adult with a cochlear implant in their head.
 
Hi dada2cole

You have gotten some responses from people who are either hard of hearing or deaf and their responses are based on their own personal experience, feel and so on, you SHOULD NOT base your son life based on these facts, you should not listen to us, heard of hearing (hoh)/deaf people who are NOT QUALIFIED to give you best advise.
I suggest that you get a 2nd opinion on your son hearing situation and may be a 3rd, one professional opinion is NOT enough to change your son life forever, you won it to your son to do the best for him, as you said you are a proud father, no matter how you solve this situation, you are a dad and this is your son, you are proud of him no matter what, he did not choice to be hoh/deaf, he is struggling like all of us here, he is trying to do his best, even though he is responding to your whisper and so on, you never know what 8 months old is actually getting and why he is responding, it does not matter if he heard some sounds, that's is NOT ENOUGH, he needs to hear the vowels, and most importantly he needs to HEAR the CONSONANTS and I'm pretty sure he is and will not hear them without help, I'm not sure how much is his hearing loss, but you said severe to profound, no matter what you do, no matter what hearing aid (HA) you get him even a $10,000 one it will never give him good consonants sounds, do not go by the hypes you heard/read so far that some are doing good and they were severe to profound when they were born, how do you what they meant with great?m how do you define GREAT in their replies, they are not certified professionals to give you the right advise for you as you are a HEARING parent to a near deaf child, you are in an emotional stat now and want to cling to any hope.

Take few months and do more research, check with several specialists, talk to some drs beside audiologists and see the good and the bad about Cochlear implants, keep in mind that your son is 8 months now and he is already severe to profound, his hearing will never get better but most likely to get worse, HA will not give him much and he will always struggle in his life, Cochlear implants may be the best option for him since you and his mom are both hearing, are you both ready to learn ASL (even though you must let him learn it just in case), are you ready to spend hours and $$$$ in special schools, special educational programs, it's going to be 18-20 years from now, are you ready to join in this fight and at the end after years from now, you may end up with Cochlear implants, think about it as whole and add what you and his mom can do for him in the long run and what his sisters/brother can contribute.

There are many scientific research that showed having Cochlear implants at much younger age is better than having it at older age, try to find these papers or PMs me for more info

I wish you the best

PS: I was born normal hearing, I lost much of my hearing within a year or so 12 years back, I'm 35 now, my loss was 90db both ears, it affected my life in the last 10-12 years I had to change career and so on, I finally had my Cochlear America in my right one over 3 weeks back, was activated around 10 days back and doing amazing, this is just my experience, some others my have different ones but still I have not seen one cochlear users that was not happy with it in a way or other, while I know there are many don't like them but never got in touch with one, I did research for one year before jumping in, I was told that longer I wait the worse the results that I will get, but remember I was born with normal hearing so I acquired the spoken language. I was told it will be much harder for people who were born with severe/profound hearing loss to get good results when they do it at late age.
 
I forgot to add that during the last 10 years I wore the best, most expensive hearing aid money could buy and I was doing great and was able to use the phone, but still I could not understand speech much without lip reading and not to forget the whole thing affected my social life, so yes you can do good with hearing aid, but the definition of good is different from person to other. Or can I say that I was functioning OK in this life but I could do way better if I have had the Cochlear implant much earlier, no one knows, but one thing for sure is that Cochlear implants were not offered to people like me several years back, they do now after they found out people are getting way better results than HA, plus Cochlear implants are covered somehow by insurance while HA are not :)
 
I'm kind of relating to what you're saying. When i was 3 i became deaf by autoimmune hearing loss. I got my first pair of hearing aids at 4. I couldn't hear very well through my left ear. My audiologist said that i would need to consider a CI on my left ear. But my parents wanted to wait until i'm older and see how my left ear was doing over time. My parents then asked me if i wanted a CI. I took awhile to decide that when i was about 8 years old because my HA in my left ear wasn't helping much. It was a big decision for me to decide at 8 years old. I decided to go ahead with it. Then after a few years with a CI, it has helped so much.

SO basically what i'm saying is, From what i'm reading in your post, It seems like your 8 month old son (if i'm correct) is doing excellent with the hearing aids. Wait until he grows a little bit older and see how he reacts with sounds until hes older. If he doesn't really hear as much like he is now, take him to the audiologist to get his hearing tested again. And if the audiologist says that he needs a CI, don't just talk about it with your wife, Your son would probably want to discuss this with you too. In my opinion, I think every child should have a chance to decide whether they want a CI or not because its their life, their body. I mean when we grow up, we're going to have to make decisions for ourselves. But either way, just take your time when making those kind of decisions.
 
Hey Coolgirl JW, are you glad you were able to chose whether or not to have a CI?
I do think that if it's ambigious that parents should carefully monitor the sitution and make sure that speech is coming along fine...After all there are still severe and profound kids who are functionally hoh with hearing aids.
 
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