My 2-month old son has severe hearing loss

shel90 said:
Jesse,

First of all...welcome to AllDeaf and I am so glad that you came in here for information. While I agree that not every deaf person is the same but I do know this...every one of us needs language. Since your son is so young, there are a lot of decisions to be made that's for sure. I would never know what it is like cuz I am deaf myself and have two hearing kids.

I grew up orally without sign language despite having a profound bilateral hearing loss of 120 dB. I was trained to make good use of my hearing aids. I can even make out a few words without lipreading but that has to be in an extremely quiet setting and requires my full concentration which isnt realistic at all time. I grew up relying on lipreading more than my hearing but my HAs did help with my lipreading. When they are off, lipreading became much more difficult.

My brother was born with the same hearing loss as I was. However, he didnt benefit from his HAs at all despite hours of speech therapy at the same oral deaf school I went to. After 5 years of struggling, my mom finally sent him to the Deaf school where he learned ASL and just took off.

I remained in mainstreamed without any exposure to ASL. It was very very difficult cuz I missed out on a lot. People assumed because I could speak so well, I could hear well. Some people with severe hearing loss can learn to speak well. The downside to that is that we miss out on a lot.

I learned ASL as an adult and because of how easy communication became for me with ASL, I wish I had both growing up.

With my HAs, I can hear voices, tell whether it is a man, woman, or child speaking, can hear alarms, sirens, engines, knocking, music and so much more. What I cant do is understand speech without lipreading and localize the sounds. I cant tell where the sounds come from.

My deafness was diagnosed at 7 months and I was fitted with hearing aids since then. I cant live without them. My brother quit wearing them when he was a child cuz they gave him headaches and the sounds were too annoying for him.

I agree with many others, learn ASL asap so your baby can have linguistic input for language development.

Hope that helps!

Congrats on your baby. They are precious, arent they? :)
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Same with me too! :lol:
 
jesse said:
Thanks to everyone for the replies so far.

Let me provide a bit more information about our situation.

He failed the new born screening test in the hospital twice, so they chalked that up to fluid in his ears and referred us to another testing facility. He was sent for another test at about 6-weeks old, the more advanced test where they monitor brain wave activity while different noises are introduced to him through ear phones (i'm sure you all know what i'm talking about). He failed that test as well and was then given a referral to an audiologist and ENT doctor. The audiologist that we saw is at Sick Children's Hospital in Toronto, Canada, where we live. He had a full battery of tests done, a few hours worth to be exact. Those tests determined that he has severe hearing loss in both ears.

Like i was saying, he is getting his hearing aids on Friday, my wife and i are looking forward to it. Thankfully they are being loaned to us on a trial basis, we just have to purchase new molds and batteries as required. If they are a benefit then we'll buy a new set. We aren't going to rush into any decisions about CI, that's not our intention. They have an assessment that Evan would go through to qualify for CI, and even at that point it's still our choice. We're hoping that the HA's will work well for him, and CI's aren't needed.

Here are some specific questions that we're wondering about:

I read alot of info that says he has to "learn how to hear". What does that mean? He's only 2 months old, don't babies have to learn how to hear either way, HOH or not?

When a noise is heard through a HA, can you tell which direction the noise is coming from?

If the hearing aids work for him, and he's able to hear at a reasonable level, will he be able to speak? I know that's a tough question to answer, and i know that its also almost impossible to answer, but it makes me feel better asking it.


That's all i can think of right now. Thanks again. :)
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Babies that are born with functioning hearing have been hearing since before birth, and are practiced at making sense of the sounds they hear immediately after birth. Likewise, they adapt quickly to environmental sounds that are everyday occurances in their environment, and react differently to unusual or unfamiliar sounds. By two months,they have begun, aslo, to recognize those sounds specific to their mother's tongue, and will pay attention to those while ignoring others. An infant's brain is developing rapidly during that first two months. Because a deaf child has not had that from the beginning, when they are first introduced to sound via hearing aids or cochlear implant, they first must learn to pay attention to all sound, and then to discriminate which sounds are important to them. For instance, a hearing baby, at 2 months, will often start to make suckling movements when they hear the sounds of a bottle of formula being prepared. A deaf baby will have to learn to associate that sound with feeding after they are fitted with aids. The good news is, he is only 2 months old, and will catch up quickly.

Whether or not he will be able to speak is not easily predicted. There are some profoundly deaf individuals who are able to develop excellent speech skills, and some with moderate losses that have a great deal of difficulty with speech. That is something that is so dependent on so many differnt variables other than simply sound perception. I urge you to think in terms of communication rather than simply in terms of speech.
 
Hi jesse!

I am from Toronto as well...east end...it's a good place to be! There are a lot of resources here that aren't available in more rural parts of Ontario. I am just finding them myself as well seeing as I recently moved here for school.

I totally agree with giving your son many options. My parents provided me with sign and oral communication when I was a child. I have lost a lot of my sign now though because I don't use it as much, but I was able to make that choice for myself. Deaf identity is complex and you need to give your son the resources to create his own identity. If he decides he wants to use only oral communication down the road make sure he has the tools available to do that (If he is capable of learning speech) If he decides he wants to sign make sure he can do that if he wants. Provide him with as many language and mediums of expression as you can! It is sooo important that you let him choose.

I am not going to go on a rant about CI's but i would like to say that I am personally very happy that my parents did not make the decision for me to get a CI. I am so glad that I was given the choice to be who I want to be. For me that is a Deaf person. Just consider what your son may want in the future. I am not telling you to not look into a CI or to not do it. They are great, but think about how he might feel.

Let me know if I can answer any other questions...feel free to PM me!

-Jenny
 
Hi Jesse and welcome. I am the hearing father of a profoundly deaf son. I think that severe falls just below profound on the hearing loss scale. I have been on this site for about a year and have learned much here. One key lesson was the difference in viewpoints on deafness. There is the pathological view where deafness is viewed as a disability and something that needs to be fixed, and then there is the cultural view where deafness is embraced as a unique difference and not considered a disability.

Here is a link that explains it pretty well.
Pathological versus Cultural Deafness - Is Deafness Medical or Cultural

There are also many that oppose CI’s for young children. There are compelling reasons behind that opposition just as there are compelling reasons a parent chooses that path. All I would encourage you to do is make sure you understand as much as possible from all sides before making any decisions that would involve surgery and the risks that go with it. Also understand that even if benefit is derived from a CI, it will not mimic natural hearing. There is a lot of time, effort and ongoing therapy with no guarantees of success. Some would argue that your time and effort would be better spent learning to communicate with your child.

My son had two CI’s of which neither provided any benefit. The reason he got a second one was because the surgeon didn’t implant the first one correctly. After much re-programming and therapy there was no benefit gained from the second one. While nobody wants to think about failures, they do occur and you have to be prepared for that. One way of mitigating any negative impact would be to learn to sign with your child now so you are able to communicate no matter what happens.

I wish you and your family all the best!
 
jesse said:
Thanks to everyone for the replies so far.

Let me provide a bit more information about our situation.

He failed the new born screening test in the hospital twice, so they chalked that up to fluid in his ears and referred us to another testing facility. He was sent for another test at about 6-weeks old, the more advanced test where they monitor brain wave activity while different noises are introduced to him through ear phones (i'm sure you all know what i'm talking about). He failed that test as well and was then given a referral to an audiologist and ENT doctor. The audiologist that we saw is at Sick Children's Hospital in Toronto, Canada, where we live. He had a full battery of tests done, a few hours worth to be exact. Those tests determined that he has severe hearing loss in both ears.

Like i was saying, he is getting his hearing aids on Friday, my wife and i are looking forward to it. Thankfully they are being loaned to us on a trial basis, we just have to purchase new molds and batteries as required. If they are a benefit then we'll buy a new set. We aren't going to rush into any decisions about CI, that's not our intention. They have an assessment that Evan would go through to qualify for CI, and even at that point it's still our choice. We're hoping that the HA's will work well for him, and CI's aren't needed.

Here are some specific questions that we're wondering about:

I read alot of info that says he has to "learn how to hear". What does that mean? He's only 2 months old, don't babies have to learn how to hear either way, HOH or not?

When a noise is heard through a HA, can you tell which direction the noise is coming from?

If the hearing aids work for him, and he's able to hear at a reasonable level, will he be able to speak? I know that's a tough question to answer, and i know that its also almost impossible to answer, but it makes me feel better asking it.


That's all i can think of right now. Thanks again. :)
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I understand that you are probably feeling very overwhelmed right now. It's great that you are doing everything you can to educate yourself so that you will be able to make informed decisions that will best fit your family's needs. You are not alone in feeling this way - even though I'm deaf and my wife is a teacher of the deaf, we both felt very overwhelmed by all of the decisions we needed to make and all the phone calls, appointments, etc.

I'm not sure where you read the research about needing to learn to hear. Was it in general or related to cochlear implants. Using hearing aids is natural hearing that amplifies sounds. A cochlear implant is electrical information that the auditory nerve needs to learn how to make sense of what the input is. That is why therapy is needed. You need to be told what the noise is so it can be identified later. Also, if the child doesn't benefit from hearing aids and the implant is not received until 6 months or whenever, that means they haven't really heard anything for that amount of time and therefore need to catch up from what they have missed in that time. Eventually, I am told, kids do catch up with work from the parents and therapy.

As for localization from where the sound is coming from, that depends on how much can be heard in both hearing aids. Our 5 year old is profoundly deaf in one ear and has a very difficult time localizing. When he is looking for me, I have to tell him I am in the kitchen or wherever. The more gain from the hearing aids, the more likely he will be able to localize sound.

Your last question is a biggie...your audiologist will explain this in detail. With a severe to profound loss, even with hearing aids, it is usually difficult to understand speech. It can be heard but sounds muffled and unclear. However, I know some profoundly deaf people who have fantastic speech using hearing aids. It took a lot of work and frustration for them to get there and it is rare but it can happen. These people did not have have the option of getting an implant. It was not offered then. The thing about the implant is, although it is not "natural" hearing, it does make it much easier to understand speech. Even the high frequency sounds like S, F, TH can be heard using an implant. Those sounds can't usually be heard using hearing aids. Usually, the training it takes with an implant - when implanted young - is far less taxing and tedious.

Again, your audiologist will discuss it probably better than I can. Please understand that I am not trying to make you feel that you must decide on an implant. My wife and I were completely AGAINST getting it only 5 years ago before we had our deaf son. But when he was born, we researched and discussed with people just like you are doing. For us, we felt it was the best decision. Of course we didn't want to put him through surgery and we were terrified we made the wrong choice. Now jump ahead 2 years later and we are so relieved. I hope your son benefits from hearing aids, and do wish the best for you and your family. Sorry this is so long but as you can see, the debate can go on and on and on forever.
 
Know all your options

Hello Jesse -

Be informed of all your choices for communication, language development, inclusion and even literacy. You are embarking on a life long learning experience. I wish you every success in whichever direction your path takes you and your family.
 
rockdrummer said:
Hi Jesse and welcome. I am the hearing father of a profoundly deaf son. I think that severe falls just below profound on the hearing loss scale. I have been on this site for about a year and have learned much here. One key lesson was the difference in viewpoints on deafness. There is the pathological view where deafness is viewed as a disability and something that needs to be fixed, and then there is the cultural view where deafness is embraced as a unique difference and not considered a disability.

Here is a link that explains it pretty well.
Pathological versus Cultural Deafness - Is Deafness Medical or Cultural

There are also many that oppose CI’s for young children. There are compelling reasons behind that opposition just as there are compelling reasons a parent chooses that path. All I would encourage you to do is make sure you understand as much as possible from all sides before making any decisions that would involve surgery and the risks that go with it. Also understand that even if benefit is derived from a CI, it will not mimic natural hearing. There is a lot of time, effort and ongoing therapy with no guarantees of success. Some would argue that your time and effort would be better spent learning to communicate with your child.

My son had two CI’s of which neither provided any benefit. The reason he got a second one was because the surgeon didn’t implant the first one correctly. After much re-programming and therapy there was no benefit gained from the second one. While nobody wants to think about failures, they do occur and you have to be prepared for that. One way of mitigating any negative impact would be to learn to sign with your child now so you are able to communicate no matter what happens.

I wish you and your family all the best!
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I was hoping you would show up here, RD!
 
Hi Jesse,

My name is Jackie and I am the mother of 2 oral deaf teenagers and I am also an oral teacher of the deaf. My son has a profound hearing loss and does very well with oral language. My daughter has a severe to profound to severe hearing loss and also has great oral skills.

I know this is all so new to you. And it must be so confusing. You are going to find that some people are really against raising your child with oral language and some are against sign language.

Every child is different so you need to make the best most informed decision for your child. You should find out about all the different ways of raising your child.

For your info, I believe you are in Toronto Canada. They have amazing services. Do you know about the sick childrens Hospital or the Listening to Learn Foundation. If you don't look them up.

To answer your question if your child has a severe hearing loss and it is severe across all frequencies, which would mean that aided he would have access to most speech sounds so he would be in the speech banana. Ever child is different and every child does different. You might have 2 kids with the same hearing but doing very different things.

The most important thing is do some research, speak to people who have different views but remember your son is your child and it is your decision to make as to what route you want to take.
jesse said:
Thanks to everyone for the replies so far.

Let me provide a bit more information about our situation.

He failed the new born screening test in the hospital twice, so they chalked that up to fluid in his ears and referred us to another testing facility. He was sent for another test at about 6-weeks old, the more advanced test where they monitor brain wave activity while different noises are introduced to him through ear phones (i'm sure you all know what i'm talking about). He failed that test as well and was then given a referral to an audiologist and ENT doctor. The audiologist that we saw is at Sick Children's Hospital in Toronto, Canada, where we live. He had a full battery of tests done, a few hours worth to be exact. Those tests determined that he has severe hearing loss in both ears.

Like i was saying, he is getting his hearing aids on Friday, my wife and i are looking forward to it. Thankfully they are being loaned to us on a trial basis, we just have to purchase new molds and batteries as required. If they are a benefit then we'll buy a new set. We aren't going to rush into any decisions about CI, that's not our intention. They have an assessment that Evan would go through to qualify for CI, and even at that point it's still our choice. We're hoping that the HA's will work well for him, and CI's aren't needed.

Here are some specific questions that we're wondering about:

I read alot of info that says he has to "learn how to hear". What does that mean? He's only 2 months old, don't babies have to learn how to hear either way, HOH or not?

When a noise is heard through a HA, can you tell which direction the noise is coming from?

If the hearing aids work for him, and he's able to hear at a reasonable level, will he be able to speak? I know that's a tough question to answer, and i know that its also almost impossible to answer, but it makes me feel better asking it.


That's all i can think of right now. Thanks again. :)
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Jesse,

Welcome! As a hearing arent of a profoundly deeaf child, I understand what you are feeling and how overwhelming it can be at times but you have already taken action and are seeking advice and guidance from others so believe me, you are moving in the right direction.

Again be patient, seek information from others such as deaf adults, parents of deaf children, educators of the deaf and professionals in the field. When you are confident/comfortable with what you have learned then proceed to make the decisions that you have determined to be in your child's best interests. However, remember that your decisions do not have to be set in concrete and be open to change and to re-evaluation of those decisions for your child.

I would strongly suggest that you join the ci-circle as there are many, many parents of deaf children who participate in the forum and share their experiences daily. Obviously, it is geared towards those who have children with cochlear implants or who are considering the cochlear implant for their child but it is a forum that is filled with parents seeking information about their deaf child and populated with people willing to share their experiences in a non-confrontational environment.

There are also several parents, some of whom used to post here, who have on-line blogs of their children that I think you would find very informative. I am glad that drew's dad responded for his is one of the blogs I would recommend visiting. Also look for the blogs about or by lotte soffe or mom to toes to name a few.

I would also contact organizations such as AGBell, the National Association for the Deaf (Not sure what the Canadian counterpart is called but the NAD can tell you) as these organizations often have local chapters where you can meet other parents and deaf adults and children.

You mentioned that your child will be receiving hearing aids this Friday, have you discussed witht he audiologist anything about speech and language therapy? Hearing aids may be helpful but even more important is speech and language therapy to help your child learn to use those aids to hopefully acquire speech and language. Equally as important is that you as parents need to involve your selves in your child's language development whether orally, manually or both. The best advice I can give you is to talk constantly to your child and then talk some more. :)

Best of luck as you begin what will truly be an amazing journey with your child!

Please feel free to pm me with any questions.
Rick
 
too earlyl to decide if he is really deaf.
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I agree with this somewhat. It can be very hard to tell exactly how well a baby hears.
I know of kids who tested as profound on ABR, but on more traditional audiograms, they tested as more functionally hoh.
And jillo........kids who are hoh (whether audilogically or functionally) don't have that problem since they have some exposure to speech. Even some profoundly deaf kids may have exposure to speech even without has.
I'm gonna have to look up some resources for you..............the resources that Rick, jackie etc have given and reccomended are a little too orally biased. Nothing wrong with that, but how about some resources and things that aren't as orally biased?
 
While CI is an option, you need to remember one thing... he will still be deaf.

So, it would help if you could help him accept the fact that he's deaf and perhaps learn some sign language. :)
 
Thanks, Ophelia for the link. I do agree with the part about many Deaf people wishing that their family would learn sign language. I am one of those people.

Ask yourself what if CI didn't work as well as expected? What if it breaks? What if you suddenly can't afford batteries (job loss, etc)? That is why I would rather see the sign language being used from the start. It is a safety net if one decides on the CI route. Personally, I think CI is not the miracle as they claim it to be.

I have severe to profound hearing loss and I wear hearing aids. I do fine with them.
 
jesse said:
Here are some specific questions that we're wondering about:

I read alot of info that says he has to "learn how to hear". What does that mean? He's only 2 months old, don't babies have to learn how to hear either way, HOH or not?

When a noise is heard through a HA, can you tell which direction the noise is coming from?

If the hearing aids work for him, and he's able to hear at a reasonable level, will he be able to speak? I know that's a tough question to answer, and i know that its also almost impossible to answer, but it makes me feel better asking it.


That's all i can think of right now. Thanks again. :)
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G'day Jesse,
Welcome to AD.

I became severely-profoundly deaf at 6 months and fitted with HA's at 8 months. I was also enrolled into oral program. I learned how to listen, how I was taught, I forgot. But did I really speak much? No, not to my recollection. My speech took off ONLY after I learned sign language at 4 years old.

Now some people can understand my speech and some cannot or they need the time to get accustomed to my speech pattern. I'm told I have good listening skill. However I'm more comfortable in signing environment.

And nowadays at home, I use sim-com (sign language and spoken English)

As for being able to locate where the sound is coming from. I personally find it really difficult to do this. I remember walking on the road and I heard noise from a driving car but I had no idea in which direction is the car coming, so I had to keep alert.

Who knows whether your son will be able to hear or speak, maybe some, maybe lots or nothing. Maybe he'll be more comfortable with oral communication or he'll be inclined to ASL. It takes time, tho, years in fact.

I'm echoing others that you all should learn ASL.

I think it would be very helpful if you meet a deaf person who could educate you about what sort of accommodation a deaf child needs and such.

Most of all, best of luck to you and your family especially the baby.

Pop in to ask questions on this forum anytime. :)
 
Miss-Delectable said:
My speech took off ONLY after I learned sign language at 4 years old.

Now some people can understand my speech and some cannot or they need the time to get accustomed to my speech pattern. I'm told I have good listening skill. However I'm more comfortable in signing environment.
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Now you remind me of my own speech therapies. The one I had when I attended the oral school and the one I had in college. The teacher in the later one use sign language while the former doesn't. Big difference. Day and night difference. I prefer the later one as it is much less stressful.

Like you, Miss Delectable, my speech is understandable with 'deaf accent'. I am the most comfortable with sign language as I am tired of repeating myself for someone who has a hard time understanding my speech.
 
Buffalo said:
Now you remind me of my own speech therapies. The one I had when I attended the oral school and the one I had in college. The teacher in the later one use sign language while the former doesn't. Big difference. Day and night difference. I prefer the later one as it is much less stressful.

Like you, Miss Delectable, my speech is understandable with 'deaf accent'. I am the most comfortable with sign language as I am tired of repeating myself for someone who has a hard time understanding my speech.
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I agree too. It gets tiresome trying to ensure that communication is clear at all times and usually the burden lies with the deaf individual.

That's why many of us get thrilled when parents learn sign language cuz many of us wish that our parents learned sign language for us. Would have made communication for us a lot easier!!
 
jesse said:
Hi everyone,

My wife and i just had a baby boy 2 months ago and he was recently diagnosed with severe hearing loss in both ears. It was a shock to both of us, but we're learning how to deal with it.

Our baby boy Evan is being fitted with hearing aids this Friday (Feb 1). I just wanted to know if anybody here has been through a similar situation with someone this age, and can share their stories and experiences with us.

If the HA's don't seem to be helping him then he'll be assessed to see if he's a candidate for CI. Obviously with a 2-month old it's going to be several months before we know anything.

Thanks,
Jesse
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I want to bring everyone back on topic again. This wonderful baby is 2 month old.

People stop arguing. Everyone one is different, that is what makes us unique.
 
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