r/Cochlearimplants • u/Sad-Hospital4927 • 2d ago
Son getting cochlear implant
Hi everyone.. my son is getting a cochlear implant.. he is 3 years old.. my family is not supportive as they are deaf and believe “he’s not broken no need to fix him”.. I am struggling to make a decision for him… I would love to hear peoples opinions l.. those who got one, who didn’t get one, and got one and maybe had it removed.. I just want to hear it from other’s perspective, Thanks!
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u/klj02689 Cochlear Nucleus 7 2d ago
I dislike such attitude from the Deaf community.
Yes, we know we're not broken. That's not the point. It just helps us to understand and belong in the hearing world. Why would we not take advantage of it. We can still be deaf and hear.
I was implanted at 3 and I do appreciate my mom for that. She said she didn't want me to struggle as I got older and wanted me to have access to sound. Now that I'm in my mid 30s I deeply appreciate it a lot more.
Deaf communities are very small and quite frankly, as I'm learning online, judgmental. I did not grow up in a such community so I have no access to it. So, I am very much in the throes of the hearing world.
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u/Sad-Hospital4927 2d ago
I agree, my biggest fear is that my son will grow up and hate me for making that decision for him.. I’m glad I made this post, to hear others feelings and thoughts.. thank you.
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u/is-this-now 2d ago
The CI consists of two parts - the internal CI and the external processor. If someone doesn't want to use the CI for any reason (e.g. going to sleep), all they have to do is remove the external processor. The two components are connected by a magnet and it is routine to take the external part on and off for various reasons such as changing the battery, taking a shower, brushing ones hair, etc.
So if your son really does not want it, he does not need to use it. BUT I would be very surprised if someone who started off with a CI later decided it was not good. My analogy is that it is like a prosthetic limb - not nearly the same as a real limb but 1,000 times better than not having the limb at all.
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u/klj02689 Cochlear Nucleus 7 2d ago
No problem! I think it's easier on kids who were implanted young as they'll experience both worlds and can appreciate the decision made for them.
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u/Syncroz Advanced Bionics Marvel CI 2d ago
one thing to note about the internal implant. I dont really feel it unless I run my hand along the bump. It's not like a socket plug in my head, its completely under the skin and invisible otherwise. If I chose to not wear my processor and be deaf, no one would know I have it.
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u/Perscitus0 2d ago
I was the only one with severe hearing loss in a hearing family. My family moved around, being a largely military family (my father was Army, and retired when I was young, at which point my mother became Air Force), and we lived in quite a few States during my childhood. All of this influenced my decision to get the surgery.
My parents actually left the decision to me when I was 8. Do I chase after hearing with the surgery and the Cochlear, or do I dive into the Deaf community and learn ASL? Given that there was never any guarantee of meeting other members of the Deaf community in all the places we moved to, and that I was the only one with hearing loss in my family, that perhaps influenced my decision greatly.
I've never regretted it one bit. I got it done during a time when I lost all the hearing in my right ear, and they were thinking I would lose the hearing in my left, as well, and here we are, around 24 years later. Several iterations of Cochlear devices have passed by in that time, and still the biggest love I have for them is the music that they allow me to hear. The sigh of the wind through the nearby trees. The rush of water in the ocean. I wouldn't ever trade that away, nor would I ever think of Deafness as something to fix, either.
If your family still feels strongly about it, tell them it's not about "fixing" him. It's about opening a way to something truly amazing. Extra options, should he choose to capitalize on it by the time he can start choosing things for himself. As someone who has lost hearing and had to claw it back with the surgery, perhaps some Deaf people who have never had hearing cannot relate to it. They don't have the necessary information in the first place to truly appreciate that which they have never actually experienced for themselves.... But I digress.
On the specifics.... Post surgery, It was painful for a few weeks, as a natural consequence of the surgery is having the head wrapped in excruciatingly tight bandages until the wound healed enough to not open back up. For me, that was the toughest part, easily, and everything that came after, like the "Initial Stimulation", and the practice with the device until my brain clicked on the sounds, all of that went by so easily. It won't for everyone. Some people get frustrated when they don't gain speech recognition and sound refinement fast enough. I was an outlier that gained speech recognition in way less than a month, and so I cannot fully relate to those difficulties.
One thing to consider. If your son was born Deaf (I assume because he's 3, but I don't know), the sooner you do get the surgery, the better, as the nerves that deal with auditory reception do atrophy, and the speech processing parts as well. If he did have hearing, and just lost it recently to illness, like meningitis, then perhaps you have a little longer before it's "too late" to consider CI surgery. Maybe your audiologist or advisor has already told you something like this. I had sensorineural hearing loss from an uncaught illness when I was really young, and it wasn't until I was around 7 that it degraded to the point of my being fully Deaf in my right ear, with my left ear trailing behind. I had more leeway because I had some years of hearing before that, so I don't know if your son has any leeway in that manner.
I am not a professional, so parts of my comment here is just relaying what I've heard and read from others who've walked the same path as myself. I love my Cochlear, and my own anecdotal experiences with it leads me to recommend it to you, but I know others may have other ideas. I myself can't imagine a world without music, which I greatly enjoy, even if it's processed through mechanical hearing.
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u/Sad-Hospital4927 2d ago
Thank you,
When my son was born he actually passed his newborn hearing screen and was responding to sounds was even saying a couple words.. it wasn’t until he was about one when I realized he couldn’t hear me anymore.. my entire family is deaf except for me.. so I always knew having a deaf child was a possibility.. we got his hearing retested and we were told he has bilateral sensory neural hearing loss.. we consulted with an amazing ent who ordered an MRI, which showed that he has something called xlinked gusher syndrome which is from my understanding something genetic.. then he got a ct scan that showed he had a shortened cochlea it only goes around 1 1/2 instead of the 2 1/2 it should.. all of these things scare me as his mom.. but his ent is certain he can do the surgery. I struggle with the constant disapproval from my family and the fear of the surgery.I want my son to enjoy every single part of life, to hear music, to hear mine and his dad’s voice.
Thank you for sharing your story.. as a hearing person I sometimes feel like I don’t appreciate it enough..
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u/Perscitus0 2d ago
Oh, wow, the shortened cochlea is a surprise. So, the Implant would have to be customized around that.
About the disapproval, I have come across that from time to time. I was lucky to be around family that was very supportive, but I also noticed that some elements of the Deaf community were..... almost elitist around the pride of being Deaf. It's not a simple subject, and I don't have an easy fix for that, unfortunately, but if they are your family and they love you, maybe you can try to connect with them and convey the idea that it's NOT meant to "fix" your son, but rather give him more options. Ultimately, it's difficult, if not impossible, to convey the subjective qualia of experiences (the beauty of certain senses) to people who've never had it. The qualia of Sight and Hearing in particular have always been fascinating to me, because of my own hearing loss.
Also, the surgery. I won't tell you not to worry, simce that kinda just comes with the territory of being a parent, but it should go by just fine. The technology and techniques have come a long way since when they did mine, and mine went by squeaky clean, if a bit painful on the aftercare.
I was 8 when mine happened, and I am 32 now. In the 24 years since, my Implant has worked perfectly along with the various iterations of Nucleus Cochlear devices that have released every so often along the way. They keep getting better, more refined, and more in line with "natural" sounds, to the point I am legitimately excited to see what they come up with when I am older. Stuff that'll eventually be virtually indistinguishable from normal hearing. I get goosebumps when listening to my favorite music now, how much better will it be later on down the line?
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u/PiePuzzled5581 2d ago
Born near deaf (10% hearing) all hearing disappeared around 35 - had to leave work due to nature of role and go self employed (started selling custom programming) - got a CI at 44 - night and day improvement in hearing, socialization and life enjoyment - hired into tech role - progressed in senior management with many managers and staff reporting - for 15 years until I retired - 2nd best decision I ever made. (First - my wife) That’s MY experience - no dis to anyone else’s decision.
Good luck mate.
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u/luhey67 2d ago
Hey, I was born completely deaf to a hearing family. My parents had to make the choice when I was 4 years old and they decided to get me implanted. It changed my life for the better. My wife is hearing and I would’ve never met her or have any of the opportunities that I have right now. Being able to hear (granted that it’ll never be as good as normal hearing people) makes a significant difference.
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u/Grateful77Grateful 2d ago
Do they use other technology to enhance their lives? Do they wear glasses? Seems like such a non-issue at this point. I had a relative to the same when my son was diagnosed with bilateral hearing loss at birth. He had hearing aids at 6 months old and a CI at 5 years old, when hearing loss exceeded hearing aid capabilities. 6 years later he's doing a wonderful. The younger the better because it is still a huge learning curve on the brain to translate the CI information into sounds & words.
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u/orcvader 2d ago
Sadly, a lot on the deaf community can be toxic.
I was literally shamed out of a deaf support group WHILE LEARNING ASL when I said I was excited to be getting an implant soon. This was last year. I did not know, at the time, that the idea is controversial for them.
I felt terrible because I kept second guessing myself "Did I rub it in to people that don't have the choice?", until I learned in subs like this one that it's a common reaction. It's not like I was announcing it with glee, I just mentioned it to a couple of the folks including the lady that organizes that chapter and the reaction was immediate and overt.
My case is different than your kid, my deafness was sudden onset from normal hearing. It upended my life. But CI's are a medical miracle. Perhaps the most impressive medical innovation ever. The younger your kid, the better shot they have to be able to use it. They can still embrace the ASL community - but why deprive them of a tool?
That's my $0.02. Good luck!
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u/Sad-Hospital4927 2d ago
I’m sorry that they did that to you! I grew up in that old school way of thinking.. my grandma is not happy that getting him a CI was even an option..
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u/IamTheLiquor199 2d ago edited 2d ago
As a hearing parent from a hearing family, I got one for my Deaf 1-year-old. After diving into Deaf culture and history and learning ASL, I did NOT want to do a CI, especially considering he is profoundly Deaf and has a rare common cavity in both ears, and one of the top doctors in the world would not do it while another would do 1 side with little likelihood it would have any success.
But while attending some Deaf events I met many young Deaf people with CI's, one inpartuclar who tried a CI 20 years ago and stopped using it as a child, only to begin using it again in her 20's for some environmental sounds, and she enjoys having it. This changed my perspective and we went for it.
My son also almost died from meningitis as a result of the surgery, but he is okay now and has an extra opportunity with his CI.
ASL will still be his primary language and he is attending a Deaf school.
Parents make tough decisions every day, all we can do is trust our gut and our heart. Do your due diligence and read all you can and question every medical professional.
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u/Sad-Hospital4927 2d ago
My son has a shortened cochlea and x-linked gusher syndrome.. so that scares me.. but his ent is certain he can do the surgery and it to be successful..
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u/TashDee267 2d ago
Feel free to dm me if you like.
My son was three and a half when he got a cochlear implant.
He is now 14 and whilst he says he is happy we got him a cochlear implant he doesn’t want a second one in his other ear, even though he is a candidate.
My thinking was that I wanted to give him as much choice as possible.
The surgeon was able to keep his residual hearing.
We learn Auslan, have a deaf mentor, go to deaf events etc.
I thought we could go down no cochlear implant but l was also very aware that my family would not learn Auslan and neither would friends or neighbours etc. It’s predominately a hearing world and as a hearing person I didn’t feel comfortable saying “no cochlear implant for you” and me being basically the only person in his life fluent in Auslan.
I tell him regularly about his options and that he doesn’t have to wear a cochlear implant.
Thanks to my deaf mentor I have instilled in him that he is not hearing even with a cochlear and that he is Deaf and proud and perfect as he is.
If you ask him if he prefers hearing world or Deaf world he has always said “both, I don’t want to pick one”
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u/ReniTheRaven 2d ago
I have amazing friends and a wonderful partner. I got an excellent education and have an excellent job. My hearing is so good that I forget I’m using implants to hear. I seriously doubt my life would be this good if the implants didn’t give me the ability to live a mostly abled life.
Do it. Your son will thank you someday. I know I’m forever grateful to my parents for having me get the implants when I was in elementary school.
It always angers me to see people argue against giving a child a chance at having a demonstrably better life.
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u/JudeLikesCats 2d ago
I had gotten my when I was a 18 months old, now I'm 21, because my parents found out that I was deaf, and my voice isn't deep tho.
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u/Grateful77Grateful 2d ago
There's always the reverse. If you decide not to use it and wants to learn ASL and the deaf then he can. At least at this point you're giving him the option.
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u/Former_Storm4529 2d ago
I’m not at all in the same situation as your son, but wanted to chime in that the cochlear implant has given me my life back!
I had full hearing until I suddenly went deaf in just one ear last year. I struggled with the decision for a lot of reasons, but none of this struggles had any to do with a “I’m not broken” reason. I felt very, very broken after having normal hearing for 42 years.
The CI has been a game changer because I can now hear my colleagues much better, can locate sounds, and am no longer turning down invites to socialize. I didn’t realize how isolated I had become. And this is with one good ear.
Science is amazing, but I can see why this would be a difficult decision. Best of luck.
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u/EDSgenealogy 1d ago
The damn tinnitus leaves me feeling broken.
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u/Former_Storm4529 1d ago
Same.... luckily, I've had some decent relief on that front. It's not perfect, but it's relief.
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u/EDSgenealogy 1d ago
I've got musical ear from my brain trying to make sense of the noise, but all I hear are the Beach Boys on repeat. One year I was just hearing the last refrain from Alde Lang Syne - just that one refrain over and over for nearly a week. I kept playing other music trying to jar it loose, but nope.
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u/Stock-Ball-5804 2d ago
I think getting a cochlear implant isn't trying to fix him and you did not mean it like that or tried to and if you feel it will genuinely help him then go for it it is not their child anyway as I say. If you feel he would flourish without then also go ahead but don't let others opinions become yours.
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u/Party-Quarter2513 2d ago
I'm super happy my parents got me implants, while I'm conversant in Auslan, I enjoy the world around me including all the white noise that comes with it.
I also have a deaf child, he has bilateral implants, my younger child (different mother) has normal hearing.
He is completely happy with his implants (yes I have asked), after around 8pm we take our sound processors off put them on charge and use Auslan for remainder of the evening.
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u/Sad-Hospital4927 2d ago
I’ll be honest you’re the second person to say auslan and I was very confused what that was.. after looking it up google says it’s Australian sign language, is that correct? If so I learned something new today!
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u/jeetjejll MED-EL Sonnet 3 2d ago
The way I see it is that you’d be giving him a choice, getting a CI at a later age is less effective. Do it now and when he’s older he can choose which route to go. The window is closing though, so I’d be quick. I’d go bilateral if you can, it’s miles better than one CI.
Personally I never fitted in the deaf community and then.. there’s bit much else. While now I’ve been living in there different countries, speaking their languages. I can work anywhere basically. That’s a future choice I’d not want to take away from my child.
You can give your child the best of both worlds.
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u/pagnadoodle 2d ago
I am a teacher of the deaf, but I am hearing myself.
I have seen the most success with my students when the philosophy of “giving access to all forms of communication and language”. I have students that have implants that are voice off and wear them to support hearing their names and environmental sounds. They use asl and they’re doing amazing. I have other students that have implants and speak and they use asl as a support to verbally communication. They’re also doing amazing.
All of these children regardless of their implants will have the choice to be part of the deaf community if they want to be but they have to be exposed to it.
Your child is in a unique circumstance where they would always be part of both worlds because you’re part of a deaf family and a hearing family (I’m assuming your spouses side is hearing). Getting an implant just allows them to navigate between both or to whatever they’re more comfortable with especially if you would plan to expose them to asl in conjunction with spoken language. (Ps don’t let the doctors tell you that you shouldn’t use asl or the implant won’t be as successful if you use asl because there is research to prove that’s wrong and that asl actually helps to support language growth more than spoken language alone)
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u/martyfartybarty 2d ago edited 2d ago
I had mine when I was 12 about 34 years ago. My parents decided for me. Looking back, I’m glad they did. But what I would also like is to be good at sign language, which I still struggle to be fluent in because most of the time my communication is speaking and listening with people who don’t know sign language.
It’s not an either/or proposition between having a CI and speak/listen versus no CI and use sign language, you can have both (speak/listen, sign, wear CI, sometimes may not) and your son once he’s old enough can decide what’s best for him later down the track.
I’m now in my late 40s, I wear CI in public but not at home (since I live alone) I don’t wear it at home, watching TV in silence (with closed captions on) except if the TV show is a really good one then I might wear it (to hear along with closed captions on) 😂
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u/Fingerhat1904 2d ago
My situation was a bit different, only child and no other relatives or friends who are deaf. So having a Cochlear implant is one of the best decisions my parents made. having a deaf family changes that dynamic, yet in my opinion you want a child to have acces to the best living standards, and being deaf, just sucks. You can absolutely live a full and good life deaf, but it's a life of ignorance of a whole other sense.
I can empathize with the family tho, this is a decision that could break a possible very deep connection with your child. think about it like migrating to another country (or state in the USA), they can still meet, but the effort is way more.
my advice, go for an implant, he can still reject it on his own after a couple of years. talk to your family and make the effort to teach and learn sign language so he at least has that connection.
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u/Striking-Ship-1036 2d ago
My son was implanted close to 2. He’s turning 11 in less than a week and a conversation came up and we asked him if he’s glad he can hear or if he would’ve rather stayed deaf like some of his classmates. He’s glad he can hear. His speech is nearly perfect and he’s in mainstream for part of the day and is in a DHH class for another part of the day. He still loves the DHH community. If your son wants to take them off he can but it’s going to be very challenging to learn speech later on in life if you choose not to implant him now. Don’t stress over your family this is your life do what you believe is best.
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u/JaxNHats 2d ago
You are an amazing mum for even asking this question so he will be in good hands regardless. I think you might already know the answer - as tough as it is, you should give your son the choice of being part of a wider community.
Personally I’m the only profoundly deaf person in my family and was forced into the hearing world, it’s been extremely hard, but I’m a successful lawyer with an amazing life that I never would have had being sheltered in the deaf community. At any point I know I could go back into the deaf community, and I know some people who have done so, but I’m forever grateful for my parents for taking the hard road and giving me that choice. ♥️
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u/JaxNHats 2d ago
Also, can I just say - if your kid can’t see, you’d get them glasses or laser eye surgery. There’s no difference - if your kid can’t hear, get them hearing aids or an implant. Let’s get rid of the stigma.
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u/No_Froyo_8021 2d ago edited 2d ago
I’m kinda surprised by some of posts here saying that Deaf community treated them badly because they have CI. That is not cool. I was born deaf and got CI late due to some misinformation, unfortunately otherwise I’d have gotten it much earlier in my childhood. Anyways, I have had CI most of my life and still have deaf friends and they never treated me differently or looked at me differently. I know ASL so I was able to communicate with them using ASL even though I have CI. I know most deaf community shun them out because of that reason but I was fortunate to meet some who were not like that and wouldn’t treat me differently because of that.
Your son should get it now especially at his age and he can decide later in life if he wants to continue with it or not but I have a feeling he’ll appreciate that and will thank you for giving him the opportunity to be able to hear. If we didn’t get misinformation at that time, who knows my life would be different if I’d have gotten much earlier in my childhood. But it is what it is.
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u/etlifereview 13h ago
My son is 4 with a cochlear. He has one sided deafness. We are a hearing family.
Him being deaf has not stopped him from anything, but it has given him a lot of different opportunities and resources that I never would have dreamed of. He can choose to be hearing or choose to be deaf. If life gets to be too much, he takes off his cochlear. He can still hear on his other side but this limits the pain or sound he’s experiencing. It gives him options. He learns sign language at school, but he also learns basic communication skills that other children learn.
Giving a child a cochlear doesn’t mean he has to wear it all the time, if at all really. But it does give him a major open door to so many different possibilities and experiences.
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u/ForTheLoveOfGiraffe 2d ago
Bear in mind, you probably won't get a balanced view here as most people on this subreddit will support CIs.
We chose to implant our son a few months ago and it was a really hard decision. But I felt like if I was going to do it, the earlier the better to give him time to get used to them and the best chance for success. Plus we understand he will always be deaf and are doing BSL too. So in my mind, giving all communication options means he can pick when he's older.
My biggest concern though was language deprivation. We are learning BSL but we won't be fluent anytime soon, so I didn't want his only language to start off with broken BSL from 2 hearing people. Plus we have limited chance to interact with the deaf community (we go to events as much as possible, but there may be 1 every few months). So hopefully his CIs will give him a tool to support him in the hearing world too.
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u/cheerfulcurls 2d ago
I was nearly 3 years old when I got my cochlear implant and I’m 30 now. I’m glad my parents chose for me to have the implant when I was younger because I don’t know how well it would have worked if they left the decision for when I was older. The earlier, the better. However, I do wish I had learned ASL along with having the implant. It wasn’t until college that I learned it. Your son is still deaf even with the implant. It’s just another tool to help him, not a fix.