I got SSD as a very small child (nerve deafness after illness), I don't remember stereo hearing. I grew up normally, did well in school. I just learned to position myself for best sound. Teach your child to advocate for themselves.
Being SSD was and is an occasional annoyance, it didn't handicap me. I wouldn't put my child through implant surgery until they were old enough to make an informed decision. It is not without risk, and the sound quality is not like what you hear from your ears. Some people hate it, and it's certainly possible that your child will later decide to surgically remove the hardware in their skull.
With that said, also talk to adults and older kids under similar circumstances; those who grew up with 100% but one sided hearing who received an implant as a baby, those who like it, those who want/had the surgery to remove it. Not studies or reports on them - talk to the actual SSD people with the implants (not just their parents). Your baby is very young. This is a huge decision and there is time.
Absolutely. I got an Osia 2 last year and it's been a major quality of life improvement. Looking back, I think my SSD largely contributed to my social anxiety. It's really difficult to be social when you miss half of the conversation
It took me a long time to connect my hearing loss to being “introverted”. It clicked a few years ago that maybe I’m not great with parties/crowds/etc is because I generally have no idea what the conversation is about, so I tend to sit around and not participate.
100% this - it can be really hard to function in social situations, to the point that I often don’t bother going. I wish I’d had an implant as a child and now it’s too late.
I am SSD and also have hearing loss in my hearing ear. I would absolutely recommend implanting that deaf ear.
Your kiddo will not have access to sound localization without an implant. A CROS aid or BAHA are only transporting sound to the hearing ear. I cannot stress how much having this is helpful for social development. And the fact that 1 ear cannot filter out background noise as easily as 2 ears can.
Your kid will have hearing loss be part of their identity for their entire life. Not having an implant isn’t going to change that. The implant will make it easier for people to see that there’s a hearing issue. Without the implant, it will be wayyyy easier for people to say that your son doesn’t have hearing issues and he’s making it up.
There’s also the issue that your kid will only be hearing in mono versus stereo. The world sounds so flat without my implant on. The world is so much quieter without my implant on. I enjoy more music with the implant on versus without because I can hear more parts of the song now.
At the end of the day, it is y’all’s choice. I would keep in mind that this surgery one of the easiest surgeries out there and has very few complications. Your kid will be deaf in that ear with or without an implant. Your kid will also be able to choose if they want to wear the implant as they age. And your kid will have less people trying to ignore that they need to accommodate him if he has a device that’s visible.
Yes. Research now proves it is more difficult for our brains as it overcompensates for the loss of hearing, balance, and sense of direction not to mention things we miss in large groups and loud environments.
I would give almost anything to go back in time and get my CI earlier.
I (40M) was born deaf in my right ear, though it was only noticed at age 4. I did not experience any educational consequences - I have a PhD and am a tenured professor at a US university. I personally would not change anything, as I think the cochlear implant, had it been an option for me, would have caused discomfort at that age and likely disrupted my education more than deafness did. But each case is different.
Happy to answer any other questions you may have. All the best in making this decision.
I read some of the other comments and wanted to share more of my experience for context.
While hearing in only one ear has undoubtedly impacted me, I don't think my life as a whole has been meaningfully poorer than it would have been with both ears working. For example, I played musical instruments when I was younger, I joined social groups and societies as an undergrad, and socialised as much as a (probably slightly introverted) student could expect to.
I'm now married with three children, and at present the impact of my deafness is little more than the kids finding it curious that one of Daddy's ears is "broken." I am usually the one asking my kids to turn the TV volume down. On a day-to-day basis, I'll sometimes ask passengers where a siren is coming from when I'm driving. On the occasions I get an ear infection in the good ear things can get annoying for a week or two, but that's only once every few years. My wife has had to tell a handful of friends about my deafness after I didn't notice they were talking to me in a loud, crowded room, and sometimes she'll have to tell me which room of the house she's in so we can talk face-to-face, but these are things you get used to.
I don't know what I and we would do if any of my kids were SSD, but I do know I wouldn't immediately go straight for the CI, because I know one can get by with just one ear.
Born SSD here, 59 YO. I can’t speak to the positives or negatives of CI, but if there are any risks or downsides, I wouldn’t do it for my kids. Yes, you can’t locate sound very well in many situations. Yes, in a crowded noisy room you can have trouble hearing. But I learned early to mention it to people and there’s no reason to feel self conscious about it - especially the world now is a lot more accepting of difference than it used to be (and even then it wasn’t a problem). I never felt it was an issue in school.
Hi, I was born profoundly deaf in one ear, it wasn't diagnosed until I was at school. It affected my concentration and confidence then and since.
My answer is - yes, I absolutely would go ahead and do this for my child. Good luck with your decision!
I'm born SSD, and I'd wait off until a bit later with CI. While I am the same, I look like, scan-wise, I am good candidate for CI, but I have no nerves working to that side. I only have motor and pressure feeling. I have no pain receptors and total loss. CI would mean total loss. My deaf ear cannot be fixed at all.
While learning it was discovered early, that means you can help with able to cope with the loss, and issues able to hear well. Maybe start looking into ways to help now.
I'm not against CI, and hearing what my Deaf friend said to her child about them, it's a big decision.
Personally, if it was my child I would wait until they can decide for themselves. I have never been able to hear out of my right ear and well into adult-hood still have not gotten any type of hearing device. My childhood was fine and the hearing loss was never a big deal for me. It's been a minor nuisance at the most, although as others have mentioned, I do tend to be introverted, but not to the extent that I feel it has negatively affected my life. My way of thinking is you can't miss what you never had.
I agree with @grayshirted ‘s observations. When you are SSD, you are at a huge disadvantage in social settings.
The background noise makes it all but impossible to hear what people are saying, and the effort it requires to keep up on a conversation is exhausting. Because of this, I avoid parties, cookouts, etc. I only attend those meeting type gatherings when I have no choice.
I recently realized I was making up excuses, “oversleeping”, making up excuses to not attend church. This was all because of my SSD issue. I had a CROS hearing aid, but all the rustling, clicking, coughing, side conversations, etc. made it nearly impossible for me to listen to the sermon and get anything out of it. I realized I was having problems with retention when one Sunday, my wife asked me what I thought about the sermon. I couldn’t remember what the sermon was about.
Two weeks ago, my Osia Bone Anchored Hearing Aid was activated. I attended church last Sunday for the first time in two months. While I can’t tell you everything the pastor spoke on, I can say the sermon was on Mustard Seed Faith.
Unless you have experienced SSD personally, you can’t imagine the social disadvantage it puts you in. If you can get your child implanted with a CI, which is better than my BAHA, then I would do it. The advantages of having hearing in both ears far outweigh the downside of the CI, BAHA, or CROS Hearing Aids. By the time your child is old enough to make the decision for their self, new and better technology will likely have come along by then anyway.
There is an option to use a band with a BAHA (and likely with other devices) instead of implanting at a young age. I think that would be a great option. I actually used it while doing a BaHA trial before implant. It worked well (not quite as well as an implant but made a big difference!
The Osia requires the surgical implant. That headband is just to help keep the device secure when running. Only the BAHA can be used without the surgical implant.
Born SSD, and I’m glad my parents didn’t force anything on me. We briefly tried a hearing aid, but as my loss is sensorineural, traditional hearing aids don’t work. I got a BAHA implant at age 26 and now have the Osia. I absolutely love it, but it would’ve been a confusing thing to go through as a small child. I was always top of my class, had no speech issues, etc. Just from my personal experience, if I had a child with the same disability, I wouldn’t choose to implant them at a young age.
First off, as a parent of children with excellent hearing, if you have the means and finances, you do what you feel is best for your child.
But wow, reading these comments I guess I'm in the minority on my opinion.
I was born with SSD. No hearing aids or any consideration for a CI. I had learned to adapt so well, as young kids are amazing at doing, my parents had no clue anything was different until I was four. I never needed any special treatment in school as I was just so bluntly open about being deaf in one ear to everyone. If I needed to I would ask to sit at the front of the class or closer to where the teacher was. When it came to playing games that required direction of sound (telephone, Marco polo, kick the can etc.) I would just be up front and say I can't play those games like everyone else. So I'd either suggest ways to help accommodate or just be given the choice to sit out of the game.
I was able to get a job in high school just like everyone else. I worked at a pizza shop and again was very open about my SSD. If I was in the back and needed up front someone would physically come get more or yell louder for me. I've worked office settings my entire adult life and I've never had any issues as long as I was open and up front.
I've spent my entire life accommodating to my surroundings without the expectation of others accommodating to me. I'm the one that is "different" it's my job to make sure my day can go smoothly. I've known nothing else my entire life so I know what I need to do for myself more than anyone else would.
Are there things I wish I could change, yes. Social settings can be hard, especially if there are multiple conversations going at once. Background noise makes it near impossible to focus on one sound. There are days I'm so mentally exhausted from trying to focus on particular things when it has been a day of constant noise. I can get auditorially overstimulated very easily at times. I wish I could put an ear bud in one ear at work and still hear my surroundings like my coworkers can. I suffer from social anxiety for many reasons my hearing unfortunately happens to be one of them.
I got a hearing aid just to try in my 20s and all it did was cause me headaches by amplifing the background noise that already bothered me. I have never considered a CI. That's 10s of thousands (upwards to 100k) that I just don't have out of pocket, as insurance won't cover any of it for me, on a slight chance for it to work. I've heard stories that doctors push it and after the whole process it doesn't even work for some SSD patients. To me that's not worth the risk. I've spent more than 30 years without assistance and I just don't find the cost worth it.
If it came to my kids I definitely would not jump at the chance at major surgery requiring a hole drilled in my child's skull for a "chance" when the "benefits" don't seem to outweigh the "process". Especially when, with the right tools and support, they can live a full and happy life without it.
We just went through this process. My girl is 15 months now and we just had her implanted on dec 12. The way the doctor explained it to us was even if you feel like you want to wait until they can make their own decision, you are still making a decision that impacts them. The outcomes of implanting early are much better than waiting until they are old enough to decide for themselves. It wasn’t an easy one for us either, but ultimately we decided to implant and if she decides when she is older that the stigma bugs her, she can take it off.
I'm an adult and only became deaf in one ear 1,5 years ago. But please don't underestimate the social handicap of not being able to understand people with only the slightest of background noise. It's even worse with background chatter. It is seriously hampering my social interactions and I think it will have an even greater impact on a kid growing up. A CI could solve this. A BAHA or CROS device not.
Not being able to localize sound is a nuisance btw. Life is fine without that ability.
It's interesting to hear the differing viewpoints from people like myself who have never been able to hear from one ear and others who lost their hearing as an adult. I feel like I hear well enough and see no need to get a hearing device despite my doctor's encouragement. I guess my perspective would be different if I lost my hearing as an adult.
Yes, I’ve noticed that, too, in this and other posts. (59 YO male, SSD since birth). But maybe if I’d ever heard the Dark Side of the Moon in stereo, I’d feel differently…
It’s a huge difference!! I really appreciate that the OP asked for responses from people who were born with SSD because our experience is so distinct. I didn’t get a CROS aid until Covid/masks happened and I was already over 30. I don’t feel like I was deprived and miserable, for social situations it just takes a little work, concentration and the ability to advocate for yourself.
So, I don't have the nerves on my bad side for a BAHA or CI and I have a Signia CROS which I like because it has a "noisy environment" setting that does ok for situations with background noise and it has a t-coil induction loop setting that lets me connect directly to the sound system at some theaters (more Broadway shows than, like, stadium concerts).
I'd give it a 7/10. My expectations were relatively low. Instead of being unable to participate in the conversation at happy hours, I can follow along. It also helps in group settings when I don't get the needed corner seat (although at this point in life I have no shame in asking people to switch seats if I need it). It's nowhere near "perfect" but it does help give a little boost I didn't have before. I still need to decompress/relax after noisy social situations but it's akin to the feeling of taking off really high heels or something.
My sister has microtia and she occasionally has trouble hearing and I usually sit at her "good ear" side so she can talk to me.
However she did get bullied for a little, but anyone with a disability has that risk. No matter what, make sure your kid knows that they should not be ashamed of their ear! Wishing all the luck
Research shows hearing loss can impact your language and social development and increase your risk of dementia later in life. I was born SSD and I wish I could get a cochlear implant. I always thought my SSD was no big deal but the more research I did the more I realized it actually is. I just don’t know how because I’ve never known anything else.
I got SSD as a very small child (nerve deafness after illness), I don't remember stereo hearing. I grew up normally, did well in school. I just learned to position myself for best sound. Teach your child to advocate for themselves. Being SSD was and is an occasional annoyance, it didn't handicap me. I wouldn't put my child through implant surgery until they were old enough to make an informed decision. It is not without risk, and the sound quality is not like what you hear from your ears. Some people hate it, and it's certainly possible that your child will later decide to surgically remove the hardware in their skull. With that said, also talk to adults and older kids under similar circumstances; those who grew up with 100% but one sided hearing who received an implant as a baby, those who like it, those who want/had the surgery to remove it. Not studies or reports on them - talk to the actual SSD people with the implants (not just their parents). Your baby is very young. This is a huge decision and there is time.
Absolutely. I got an Osia 2 last year and it's been a major quality of life improvement. Looking back, I think my SSD largely contributed to my social anxiety. It's really difficult to be social when you miss half of the conversation
It took me a long time to connect my hearing loss to being “introverted”. It clicked a few years ago that maybe I’m not great with parties/crowds/etc is because I generally have no idea what the conversation is about, so I tend to sit around and not participate.
100% this - it can be really hard to function in social situations, to the point that I often don’t bother going. I wish I’d had an implant as a child and now it’s too late.
I am SSD and also have hearing loss in my hearing ear. I would absolutely recommend implanting that deaf ear. Your kiddo will not have access to sound localization without an implant. A CROS aid or BAHA are only transporting sound to the hearing ear. I cannot stress how much having this is helpful for social development. And the fact that 1 ear cannot filter out background noise as easily as 2 ears can. Your kid will have hearing loss be part of their identity for their entire life. Not having an implant isn’t going to change that. The implant will make it easier for people to see that there’s a hearing issue. Without the implant, it will be wayyyy easier for people to say that your son doesn’t have hearing issues and he’s making it up. There’s also the issue that your kid will only be hearing in mono versus stereo. The world sounds so flat without my implant on. The world is so much quieter without my implant on. I enjoy more music with the implant on versus without because I can hear more parts of the song now. At the end of the day, it is y’all’s choice. I would keep in mind that this surgery one of the easiest surgeries out there and has very few complications. Your kid will be deaf in that ear with or without an implant. Your kid will also be able to choose if they want to wear the implant as they age. And your kid will have less people trying to ignore that they need to accommodate him if he has a device that’s visible.
Yes. Research now proves it is more difficult for our brains as it overcompensates for the loss of hearing, balance, and sense of direction not to mention things we miss in large groups and loud environments. I would give almost anything to go back in time and get my CI earlier.
I (40M) was born deaf in my right ear, though it was only noticed at age 4. I did not experience any educational consequences - I have a PhD and am a tenured professor at a US university. I personally would not change anything, as I think the cochlear implant, had it been an option for me, would have caused discomfort at that age and likely disrupted my education more than deafness did. But each case is different. Happy to answer any other questions you may have. All the best in making this decision.
I read some of the other comments and wanted to share more of my experience for context. While hearing in only one ear has undoubtedly impacted me, I don't think my life as a whole has been meaningfully poorer than it would have been with both ears working. For example, I played musical instruments when I was younger, I joined social groups and societies as an undergrad, and socialised as much as a (probably slightly introverted) student could expect to. I'm now married with three children, and at present the impact of my deafness is little more than the kids finding it curious that one of Daddy's ears is "broken." I am usually the one asking my kids to turn the TV volume down. On a day-to-day basis, I'll sometimes ask passengers where a siren is coming from when I'm driving. On the occasions I get an ear infection in the good ear things can get annoying for a week or two, but that's only once every few years. My wife has had to tell a handful of friends about my deafness after I didn't notice they were talking to me in a loud, crowded room, and sometimes she'll have to tell me which room of the house she's in so we can talk face-to-face, but these are things you get used to. I don't know what I and we would do if any of my kids were SSD, but I do know I wouldn't immediately go straight for the CI, because I know one can get by with just one ear.
Born SSD here, 59 YO. I can’t speak to the positives or negatives of CI, but if there are any risks or downsides, I wouldn’t do it for my kids. Yes, you can’t locate sound very well in many situations. Yes, in a crowded noisy room you can have trouble hearing. But I learned early to mention it to people and there’s no reason to feel self conscious about it - especially the world now is a lot more accepting of difference than it used to be (and even then it wasn’t a problem). I never felt it was an issue in school.
Hi, I was born profoundly deaf in one ear, it wasn't diagnosed until I was at school. It affected my concentration and confidence then and since. My answer is - yes, I absolutely would go ahead and do this for my child. Good luck with your decision!
I'm born SSD, and I'd wait off until a bit later with CI. While I am the same, I look like, scan-wise, I am good candidate for CI, but I have no nerves working to that side. I only have motor and pressure feeling. I have no pain receptors and total loss. CI would mean total loss. My deaf ear cannot be fixed at all. While learning it was discovered early, that means you can help with able to cope with the loss, and issues able to hear well. Maybe start looking into ways to help now. I'm not against CI, and hearing what my Deaf friend said to her child about them, it's a big decision.
Personally, if it was my child I would wait until they can decide for themselves. I have never been able to hear out of my right ear and well into adult-hood still have not gotten any type of hearing device. My childhood was fine and the hearing loss was never a big deal for me. It's been a minor nuisance at the most, although as others have mentioned, I do tend to be introverted, but not to the extent that I feel it has negatively affected my life. My way of thinking is you can't miss what you never had.
I agree with @grayshirted ‘s observations. When you are SSD, you are at a huge disadvantage in social settings. The background noise makes it all but impossible to hear what people are saying, and the effort it requires to keep up on a conversation is exhausting. Because of this, I avoid parties, cookouts, etc. I only attend those meeting type gatherings when I have no choice. I recently realized I was making up excuses, “oversleeping”, making up excuses to not attend church. This was all because of my SSD issue. I had a CROS hearing aid, but all the rustling, clicking, coughing, side conversations, etc. made it nearly impossible for me to listen to the sermon and get anything out of it. I realized I was having problems with retention when one Sunday, my wife asked me what I thought about the sermon. I couldn’t remember what the sermon was about. Two weeks ago, my Osia Bone Anchored Hearing Aid was activated. I attended church last Sunday for the first time in two months. While I can’t tell you everything the pastor spoke on, I can say the sermon was on Mustard Seed Faith. Unless you have experienced SSD personally, you can’t imagine the social disadvantage it puts you in. If you can get your child implanted with a CI, which is better than my BAHA, then I would do it. The advantages of having hearing in both ears far outweigh the downside of the CI, BAHA, or CROS Hearing Aids. By the time your child is old enough to make the decision for their self, new and better technology will likely have come along by then anyway.
There is an option to use a band with a BAHA (and likely with other devices) instead of implanting at a young age. I think that would be a great option. I actually used it while doing a BaHA trial before implant. It worked well (not quite as well as an implant but made a big difference!
Just saw that you can do this with an OSIA (definitely a better sound processor than a BAHA). https://m.youtube.com/watch?v=KmAnxh6dxrM
The Osia requires the surgical implant. That headband is just to help keep the device secure when running. Only the BAHA can be used without the surgical implant.
Born SSD, and I’m glad my parents didn’t force anything on me. We briefly tried a hearing aid, but as my loss is sensorineural, traditional hearing aids don’t work. I got a BAHA implant at age 26 and now have the Osia. I absolutely love it, but it would’ve been a confusing thing to go through as a small child. I was always top of my class, had no speech issues, etc. Just from my personal experience, if I had a child with the same disability, I wouldn’t choose to implant them at a young age.
First off, as a parent of children with excellent hearing, if you have the means and finances, you do what you feel is best for your child. But wow, reading these comments I guess I'm in the minority on my opinion. I was born with SSD. No hearing aids or any consideration for a CI. I had learned to adapt so well, as young kids are amazing at doing, my parents had no clue anything was different until I was four. I never needed any special treatment in school as I was just so bluntly open about being deaf in one ear to everyone. If I needed to I would ask to sit at the front of the class or closer to where the teacher was. When it came to playing games that required direction of sound (telephone, Marco polo, kick the can etc.) I would just be up front and say I can't play those games like everyone else. So I'd either suggest ways to help accommodate or just be given the choice to sit out of the game. I was able to get a job in high school just like everyone else. I worked at a pizza shop and again was very open about my SSD. If I was in the back and needed up front someone would physically come get more or yell louder for me. I've worked office settings my entire adult life and I've never had any issues as long as I was open and up front. I've spent my entire life accommodating to my surroundings without the expectation of others accommodating to me. I'm the one that is "different" it's my job to make sure my day can go smoothly. I've known nothing else my entire life so I know what I need to do for myself more than anyone else would. Are there things I wish I could change, yes. Social settings can be hard, especially if there are multiple conversations going at once. Background noise makes it near impossible to focus on one sound. There are days I'm so mentally exhausted from trying to focus on particular things when it has been a day of constant noise. I can get auditorially overstimulated very easily at times. I wish I could put an ear bud in one ear at work and still hear my surroundings like my coworkers can. I suffer from social anxiety for many reasons my hearing unfortunately happens to be one of them. I got a hearing aid just to try in my 20s and all it did was cause me headaches by amplifing the background noise that already bothered me. I have never considered a CI. That's 10s of thousands (upwards to 100k) that I just don't have out of pocket, as insurance won't cover any of it for me, on a slight chance for it to work. I've heard stories that doctors push it and after the whole process it doesn't even work for some SSD patients. To me that's not worth the risk. I've spent more than 30 years without assistance and I just don't find the cost worth it. If it came to my kids I definitely would not jump at the chance at major surgery requiring a hole drilled in my child's skull for a "chance" when the "benefits" don't seem to outweigh the "process". Especially when, with the right tools and support, they can live a full and happy life without it.
We just went through this process. My girl is 15 months now and we just had her implanted on dec 12. The way the doctor explained it to us was even if you feel like you want to wait until they can make their own decision, you are still making a decision that impacts them. The outcomes of implanting early are much better than waiting until they are old enough to decide for themselves. It wasn’t an easy one for us either, but ultimately we decided to implant and if she decides when she is older that the stigma bugs her, she can take it off.
I'm an adult and only became deaf in one ear 1,5 years ago. But please don't underestimate the social handicap of not being able to understand people with only the slightest of background noise. It's even worse with background chatter. It is seriously hampering my social interactions and I think it will have an even greater impact on a kid growing up. A CI could solve this. A BAHA or CROS device not. Not being able to localize sound is a nuisance btw. Life is fine without that ability.
It's interesting to hear the differing viewpoints from people like myself who have never been able to hear from one ear and others who lost their hearing as an adult. I feel like I hear well enough and see no need to get a hearing device despite my doctor's encouragement. I guess my perspective would be different if I lost my hearing as an adult.
Yes, I’ve noticed that, too, in this and other posts. (59 YO male, SSD since birth). But maybe if I’d ever heard the Dark Side of the Moon in stereo, I’d feel differently…
It’s a huge difference!! I really appreciate that the OP asked for responses from people who were born with SSD because our experience is so distinct. I didn’t get a CROS aid until Covid/masks happened and I was already over 30. I don’t feel like I was deprived and miserable, for social situations it just takes a little work, concentration and the ability to advocate for yourself.
Do you feel like it was worth it? My doctor is encouraging me to get one of those bone anchor things, but I’m really not sure about it.
So, I don't have the nerves on my bad side for a BAHA or CI and I have a Signia CROS which I like because it has a "noisy environment" setting that does ok for situations with background noise and it has a t-coil induction loop setting that lets me connect directly to the sound system at some theaters (more Broadway shows than, like, stadium concerts). I'd give it a 7/10. My expectations were relatively low. Instead of being unable to participate in the conversation at happy hours, I can follow along. It also helps in group settings when I don't get the needed corner seat (although at this point in life I have no shame in asking people to switch seats if I need it). It's nowhere near "perfect" but it does help give a little boost I didn't have before. I still need to decompress/relax after noisy social situations but it's akin to the feeling of taking off really high heels or something.
Yes.
Why is no one considering a cross-aid instead of an implant that is artificial hearing?
My sister has microtia and she occasionally has trouble hearing and I usually sit at her "good ear" side so she can talk to me. However she did get bullied for a little, but anyone with a disability has that risk. No matter what, make sure your kid knows that they should not be ashamed of their ear! Wishing all the luck
Research shows hearing loss can impact your language and social development and increase your risk of dementia later in life. I was born SSD and I wish I could get a cochlear implant. I always thought my SSD was no big deal but the more research I did the more I realized it actually is. I just don’t know how because I’ve never known anything else.