Hi, my daughter got bi lateral implants this time last year. Obvisouly every child responds differently but I was so scared before hand and worried we'd made the wrong decision. She had used hearing aids since she was 2 but at 15/16 her right ear suddenly went dead for no reason they could find. Due to her age she had bilateral implants at 17 - we would have preferred to space them out. The op was about 5 hours I think, I just paced the streets of London! Her head was very sore that night but the wounds healed well and she was up and about the next day. She was switched on after 4 weeks (it's often longer than that but she had to be ready for college). She had heard well with her aids and communicates through speech so picked up her new listening pretty fast. I think this was because she knew what she was listening to already. We used a lot of the online listening games and let her relearn our voices. A year later she is flying - has really good hearing in both ears, can still enjoy music as this isn't guaranteed. She practised a LOT listening to her favourite songs and it paid off. She did her ballet exams with implants and is off to uni. She found the period before switch on really tough as she is so used to listening so felt very isolated. The strange sounds at first annoyed her too but the key is wearing them as much as possible to shorten this part. She literally wore them morning to night as soon as she was switched on.

keep us posted and although I'm an expert at hearing aids I'm very new to CIs. All the best.

Hey, I have 2 children both profoundly deaf and have bilateral cochlear implants. I like you was very nervous in the begginging as I never had even heard of it before. I can honestly tell you it's the best decision I have ever made. Both of my children are doing great. I would love to speak to you properly and help you through this difficult experience. If you would like to have a chat over the phone with any questions I would be more then willing to help. 

good luck! 

Thank you both so much! Yeah we think it's the best for him! We have just had our first appointment with the cochlear implant place! so just wanted to know more about and that, but I have been reading online and books I got from hospital! I am so glad they work so well for your children! What ages Did your two get them done? if you don't mind me asking, my son is over 2 years will be 3 in March! my partner agreed to get it done As I wanted it done before cause I know it will help him so much in the future! So now just the waiting game For the appointments, it's just so scary about The operation! and thank you so much For replying and reading!

I hope yous and your family are keeping well during this awful time! 

Aw no problem. My daughter is now 7 and my son is 4, they were both Implanted young, my daughter was 12 months and my son was nearly 15 months. If we ever did chat over the phone I would let you hear them and you would be surprised. My partner is the same as yours! He found it very difficult but now is just amazing with everything. The thing you have to remember is everyone is different. Both my children's inpants were completely different. So you will hear good storys and you will hear bad story's because everyone has a different experience. The operation ah it is awfull of course it's a big operation but please don't get stressed out children bounce back quickly both my children were running around the ward the day after opp,  Does your son have any other needs? Also was he born deaf? I was quite young when I had my daughter and it was a lot for me to take in so I honestly do understand how you feel. It is a massive decision and I'm sure you'll make the right one. Also the younger your son is implanted the better he do. You have a long road ahead and when you reach the end everything will be worth it. Just remeber an implant is not a cure for deafness like a lot of people think. 

please don't feel any question is inappropriate or silly you can ask me anything, I have been we're you are and I will help you anyway i can, like you me and my partner new no one with an implant we had never even seen it, so I think it will be good for you to have someone to speak to because unless people are going through the same thing they just don't understand. 

speak soon!

Codie 

I'm slightly different as my daughter was 17. She was diagnosed at 21 months and wore haring aids since then but her hearing slowly got worse. It was the decision I never wanted to make as its permanent so it wasn't easy and it was also up to her too. She stayed in overnight after the op as we live over an hour away from London but she came home in the car the next day. Certainly after a day and night she was felling pretty good. We've been happy with the decision but because she takes so well before hand it was easier for her to adjust I think. She's currently in the pool, chatting away with friends wearing a waterproof kit and life is good! 

Hi my daughter is 2yrs old now and she had both her implants when she was 10 mths old early last year. I was the same has you, I doubted my decision to let her have them before during and after the operation. But now, just over a year later I can say it was the best thing we could have done for her , she is doing soo amazing. If you need a chat also here

Hi

my son is 9 months old now and had CIs age 9.5months (bilateral). He was born profoundly deaf in both ears. Honestly it has been the best decision ever! He has been hearing since his switch on 9 months ago and his teacher of the deaf says his speech is on par or better than a hearing 18 month old. And we’ve only had a few months of speech therapy at the beginning of the year pre Covid..honestly it’s just amazing that by hearing us talk all day he can pick things up and progress so much. We were so worried because we knew that the hearing aids would not really work as he was born profoundly deaf and it seemed like we were wasting valuable hearing time just waiting for him to get his implants. But kids learn so fast and honestly the access to sound via the CIs has been amazing! 

My daughter, now 4 months, was diagnosed as profoundly deaf from birth.

we have just had our first appointments through with the CI team so excited and nervous to see what that journey brings!

Hi Everyone. 

I am here to seek some advice if you can share your experience and help me out will be highly and greatly appreciated. 

My son is 5 and a half years old, diagnosed a progressive hearing loss  (EVA). Currently, he is wearing a hearing aid, but his hearing will continually drop, so we have been offered a bilateral implant.  I fully understand implant will definitely the solution for him, however, now I am very confused about what to do, shall we do both ear implants at the same time. Or we shall let him have one implant and another one continually with a hearing aid, then do the second one later on. 

I feel extremely nervous about the operation, really do not know which way is best suitable,  my husband does not want him to lose his original hearing in one shot, so only agree to do one implant.  However, the doctor mentioned, it will be difficult for a child to adapt if do one now and do the second implant after a few years. 

Kindly share your experience. Thank you very much everyone in advance. 

Hello,

I am in the same boat as you. My Daughter is 4 and was diagnosed last week with EVA due to a sudden drop in hearing. She manages quite well with hearing aids but I have been advised that CI will benefit her as she struggles with some sounds. I struggle with the fact that she will have no access to sound while waiting for the switch on. I have read so many positive reviews but it's such a hard decision. We are just waiting on her initial assessment so will hopefully find out more then and what techniques we can use during that time. I just feel my Daughter will panic and be very emotional and scared during this time.

Hello,

Thank you for posting your recent comments.

I’m sorry you’ve not had many responses yet. The current thread was started quite a few months ago but it would be great if you could start a new thread about progressive hearing loss and cochlear implants. That way it might be more visible to other parents.

You’re also very welcome to contact our Helpline team if you’d like any information or support.

Take care,

Claire

Your Community moderation team  

Hi

My son is now 3.5 and his 2 year op anniversary was 2 days ago. Let me tell you something, I was absolutely TERRIFIED about the op!! It's horrendous waiting for it, imagining everything they will be doing to him, taking him in that day knowing you will have to watch him be put to sleep and taken away. The thought still fills me with the same feelings! Physically sick being one!! 
he has since had a couple of infections in the implant site and been through hell with hospital stays bec of it! the second time He had to stay in 2 weeks for IV antibotics and each day had to be given a new canular in his hand because they failed every day. Then the decision was made to get him in the operating theatre under general anaesthetic to put a long line in, desig for long term meds. i was kicking off with it all, it was hideous watching him scream ever time they had to embed a giant needle and tube into his tiny hand!! He wasmy even 2 at the time! Then when the long line gained less than 24hrs later I was done!! I was angry and told them things I maybe shouldn't have! He was sent home with oral for the rest. 
but one thing is for certain, these magical ears are worth every single bit of heartache and stress and pain you have to (or may have to) endure briefly at the start! They are miraculou and should be snapped up by anyone lucky enough to be offered them!! 100%!! The difference they make is impossible to comprehend. I could never imagine my son saying my name, my brain wouldn't allow it! And now he gets on my nerves saying it! He is slow with speech but it's coming and his understanding is amazing, he can communicate effectively with familia people and follow instructions. Before he wouldn't turn to a loud banging right behind his head (just as he doesn't if I take his ears off). 
they are worth, in my opinion, the brief torment that you will go through regardless of what anyone says on here to try and chill you out. you will be giving the same advice to someone like you in a years time, trust me. 

just try to focus on positives of this and nothing else. The benefits are immeasurable.

good luck to you all :)

Hi

My son is now 3.5 and his 2 year op anniversary was 2 days ago. Let me tell you something, I was absolutely TERRIFIED about the op!! It's horrendous waiting for it, imagining everything they will be doing to him, taking him in that day knowing you will have to watch him be put to sleep and taken away. The thought still fills me with the same feelings! Physically sick being one!! 
he has since had a couple of infections in the implant site and been through hell with hospital stays bec of it! the second time He had to stay in 2 weeks for IV antibotics and each day had to be given a new canular in his hand because they failed every day. Then the decision was made to get him in the operating theatre under general anaesthetic to put a long line in, desig for long term meds. i was kicking off with it all, it was hideous watching him scream ever time they had to embed a giant needle and tube into his tiny hand!! He wasmy even 2 at the time! Then when the long line failed less than 24hrs later I was done!! I was sooo angr!! He was sent home with oral for the rest as I refused any more. 
but one thing is for certain, these magical ears are worth every single bit of heartache and stress and pain you have to (or may have to) endure briefly at the start! They are miraculou and should be snapped up by anyone lucky enough to be offered them!! 100%!! The difference they make is impossible to comprehend. I could never imagine my problem son saying my name, my brain wouldn't allow it! And now he gets on my nerves saying it! He is slow with speech but it's coming and his understanding is amazing, he can communicate effectively with familia people and follow instructions. Before he wouldn't turn to a loud banging right behind his head (just as he doesn't if I take his ears off). 
they are worth, in my opinion, the brief torment that you will go through regardless of what anyone says on here to try and chill you out. you will be giving the same advice to someone like you in a years time, trust me. 

just try to focus on positives of this and nothing else. The benefits are immeasurable.

good luck to you all :)

Hi

My son is now 3.5 and his 2 year op anniversary was 2 days ago. Let me tell you something, I was absolutely TERRIFIED about the op!! It's horrendous waiting for it, imagining everything they will be doing to him, taking him in that day knowing you will have to watch him be put to sleep and taken away. The thought still fills me with the same feelings! Physically sick being one!! 
he has since had a couple of infections in the implant site and been through hell with hospital stays bec of it! the second time He had to stay in 2 weeks for IV antibotics and each day had to be given a new canular in his hand because they failed every day. Then the decision was made to get him in the operating theatre under general anaesthetic to put a long line in, desig for long term meds. i was kicking off with it all, it was hideous watching him scream ever time they had to embed a giant needle and tube into his tiny hand!! He wasmy even 2 at the time! Then when the long line failed less than 24hrs later I was done!! I was sooo angr!! He was sent home with oral for the rest as I refused any more. 
but one thing is for certain, these magical ears are worth every single bit of heartache and stress and pain you have to (or may have to) endure briefly at the start! They are miraculou and should be snapped up by anyone lucky enough to be offered them!! 100%!! The difference they make is impossible to comprehend. I could never imagine my son saying my name, my brain wouldn't allow it! And now he gets on my nerves saying it! He is slow with speech but it's coming and his understanding is amazing, he can communicate effectively with familia people and follow instructions. Before he wouldn't turn to a loud banging right behind his head (just as he doesn't if I take his ears off). 
they are worth, in my opinion, the brief torment that you will go through regardless of what anyone says on here to try and chill you out. you will be giving the same advice to someone like you in a years time, trust me. 

just try to focus on positives of this and nothing else. The benefits are immeasurable.

good luck to you all :)

Hi Jasmine

My daughter is now 21 and was born profoundly deaf. She had her first CI at 19 months and her second aged almost 10 years (when NICE agreed to bilateral implants for children). I can honestly say having CIs is the best gift we could have ever agreed for her... because of them she has been able to access mainstream education (with TA support to check she has heard everything she is supposed to), she adores music and theatre, and she has a very natural speaking voice (so much so that people don't usually realise she is deaf unless they can see her CIs). What are the downsides to CIs? They can go wrong like all technology (which means a visit to the CI team to get it fixed), it is still difficult to hear in noisy environments - restaurants, public places, wide open spaces, group settings, and it can be tricky to catch conversation when people turn their heads away. She is very adept at lip reading. HOWEVER what would the alternative have been...learning to sign for all of us all of the time. She and I have learnt to sign but we use this as a back up when she isn't wearing her CIs (at night or when she doesn't want to). We are also friends with people who only sign and their integration with the hearing world is very difficult.

I feel that my daughter has the best of both worlds with CIs - the ability to chat and mix with hearing people using spoken language, and the ability to switch off for complete peace and quiet when she wants to. The operation goes by very quickly and our daughter bounced back almost immediately after both her surgeries. Children are amazingly resilient. The question I would urge you to think about is what is confusing you? If it is the operation, really it is now very simple and efficient. If it is the permanency of having an implant, your child can choose not to wear her processors. But if you choose not to allow her access to the amazing CI technology now, will she resent you for it when she is older? I can honestly say hand on heart that I cannot think of a single reason for not agreeing to your daughter having implants, unless there is a medical reason that precludes it. 

I would be very happy to chat to you on the phone if you have any questions or want to chat through your doubts. Very best wishes to you, your daughter and your whole family. Sharon

HiI am a grandparent of a two year old who has just received her cochlear implant's. She is a very determined little girl and focuses on visual things. We are finding it hard to get her attention to listen. Are there any toys or apps we can use to encourage her to listen to sounds. 
many thanks Sue 

my daughter is 18 now and had her implants one at 2 years old the second at 5 years old she has been to mainstream school and has just left college with distinctions so has done really well better than most people expected of a wearer of cochlear implants, as others have said every child is different but they soon bounce back after the ops 

my daughter says it was rhe best present she has ever been given 

more than happy to chat with you and you can chat with my daughter too, and ask her questions. 

there's nothing better than talking to people who have been through it too