Hi I would have both done at the same time , my daughter has implants in both sides and if I had to choose what to do again it would remain the same answer . He is young enough to cope with the change and it will save him going through an 2nd operation. 

Hopefully this helps you , take care

Hi Dani,

I'm sorry to hear that your son has progressive hearing loss.  I think this is common with children who have EVA and I think it might help with your decision to have cochlear implants because his hearing will only get worse.  If he currently qualifies for cochlear implants then I think it is unlikely he can hear speech and is probably relying heavily on lip reading and visual body language and other cues to work out what is being said.  Most people did not know that our daughter was deaf as she was able to respond appropriately most of the time to questions!  Even we were surprised as to what little speech she was able to hear when she did a test with the cochlear team.  

In children they offer to do bilateral cochlears as the medical proffessions feel this is best for them.  I believe that the only reason adults are offered one cochlear implant is due to lack of funding - it always comes down to money.  I have a friend who had a cochlear implant when she was an adult and she says she wishes she had two but there isn't anything she can do about it and is lucky to have one.

Our daughter had moderate hearing loss and wore bilateral hearing aids.  She was diagnosed with Pendred Syndrome and EVA after she she had a bump to the head and lost her hearing completely at 3 years old.  The bump was very minor with no marks but because it was the side of her head it caused her to suddenly lose her hearing.  

We were happy she was going to have bilateral cochlears because it meant she would be able to hear the same on both sides which is very useful to know where sounds come from espeically when there is a group of people talking.  We felt the amount of sounds she was currently able to hear were only very loud sounds and they did not benefit her as much as having cochlears would as with cochlears she can access speech.  She has had very fast results since having the cochlears mainly because she had a firm grasp of language and wasn't starting from scratch (if she was a baby) so that was a big advantage for her.  There are other advantages too - with cochlears you can wear one in the water so at the swimming pool or beach with a protective cover.  This is amazing and makes a real difference to them being able to hear in the water.  

The operation was a scary and worrying time but we felt it was essential to give her the opportunity to hear again and we felt it was well worth it.  The hopsital staff were amazing and have done the operation many times.  

Our daughter particularly loved music and watching her enjoy it again and being able to sing along is magical. 

What are the professionals advising?

Also would you want him to go through the operation twice?

It is a hard decision for any parent to make for their child and we found it tough.  We were luckly to be able to meet and speak to other children who had cochlears and they had amazing speach and even spoke two languages!  

CICS is the national cochlear implant charity and you can find them online.  If you contact them and join which is free they will send you a whole information pack which is really supportive.  

Our daughter is in reception now and has an EHCP (which you can get because of the cochlears)  Her teachers use a radio aid and she has a teaching assistant to support her.  Althought chidlren with hearing aids need support too it seems like if your child has cochlears they are more likely to get access to additional support that they will need at school and makes a massive difference! 

I hope this helps

Hello, 

Dani we are in similar position, its a big decision. 

Our daughter is nearly 8 now, and was diagnosed at birth as deaf. She has had hearing aids since 18months old and her tests currently have been pretty consistant, we do occasionaly see drops when she has a wax build up or is congested after colds but then it returns to normal again. We went on to have an MRI scan when she was around 4years, which confirmed she has EVA. 

We have looked for the last few years and are still considering cochlear implants? She qualifies for them but with her case we still have some levels of hearing, especially in her left ear. So this is a hard decision for us since both ears for children now have to be completed at the same time. I get the point of not wanting to put them through the operation twice, but when you might not need to have the 2nd ear done ever or have a long while before its needed, it is a big decision! We are aware that with EVA the hearing is expected to get worse, so we are just currently monitoring this, but would love to hear from anyone who has had similar decision to make or experiences with EVA when the deterioration started. Thanks 

Thank you so much Sparkle for your time and everything. 

Hi Ja

I am so sorry to hear you are experiencing the same pain like us. I have to say, it is a really difficult one, and there is no right or wrong

My son is going to have his implant surgery in 2 weeks time, I still could not make the decision. However, I believe eventually we will choose to do one by one, instead of all go in one go. My husband has very strong opinion on this, he wants to preserve his natural hearing as long as possible. 

I will definitely share the result with you once we finish the operation, to see how the residual hearing goes, hopefully, will help you in that stage. 

Hi Dani, 

Just thought I would drop a note to check how your son has got on with the implant surgery, hope all went well. 

Looking forward to hearing from you. 

Hi Ja

Thank you for your message. 

My son has now completed his implant surgery, all went well. and he had a very speedy recovery as well. God blessed, within few days, he can start to communicate with CI, which is out of my expectation. 

Also, eventually, we decided to do one by one, therefore, now he is bimodal, i.e. one ear with CI and one ear with a hearing aid. we are very happy with our decisions. 

If you have any questions, please feel free to drop me a message. I will be more than happy to share our experience and thoughts with you. 

Glad to hear all went well with the surgery and using the bimodal. Are you able to advise which implant centre you are using? Thanks