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Profoundly deaf and can’t have cochlear implant

Discussion
Posted by agug12
01/08/21 09:16 PM

Hi! 
I have a 5 month old son, he was born profoundly deaf.

We have had lots of tests and mri scans, and we found out Unfortunately he is unable to have cochlear implants on either ear due to him being born with no hearing nerves. It's very rare but we are trying to come to terms with it. He is also having his sight investigated as he sturggles to fix and follow anything. He has developmental delay but seems to be doing really well in some areas and not others.

I have been reading through lots of information and I can't seem to find anyone else in the same situation as we are in. I was curious to see if anyone on here is or knows anyone who is going through a similar situation. 

We have been so well supported by the hospital, I just wanted to find something more suited to my son as most charities have said its mainly for people with slight hearing/ implants.

Thanks in  advance! 

Discussion
Posted by happy127
08/08/21 02:10 AM

Congratulations on the birth of your little boy!

My son, now 3 years old, was also born profoundly deaf. He was also diagnosed with a few other conditions including Duanes syndrome which restricts the movement of his eyes. Our situation was similar to yours in that his inner ear anatomy was also compromised, the left ear worse than the right. Luckily our surgeon managed to insert a partial cochlear implant in our sons right ear. However, even though the surgery went better than expected, eight months later our son is still unable to hear anything. This is likely due to the damaged auditory nerve. 

Our son didn't have his MRI until he was nearly 18 months old. In hindsight I wish we had this done sooner so that we could have begun learning and teaching him BSL a lot sooner rather than waiting for him to hear. Therefore I would strongly advise introducing signing to your son now. Because of the delay in our situation we are struggling with some bad behaviour and enrolling him into the right educational setting has also been delayed. 

We have as parents come a long way from when we first found out about his hearing loss. Initially we were struck by grief and disbelief. I worried about how he would play with his sister and if he would be isolated from other children etc. But once I was able to separate how I felt and what I needed to do, I coped better. I focus more on establishing a language with him and making him happy...and when I step back and see how happy he is my emotions automatically heal. And it's only now that I truly realise that as long as he is happy everything else will work out. There is a lot of support out there. 

On the medical side of it, we have been told about auditory brain implants as the next possible option. I believe this by passes the ear completely and therefore doesn't rely on auditory nerves. We are opting out of this because for us, the risks outweigh the outcome. From my understanding very few children are able to access speech with an ABI; most are just able to access environmental sounds. It would be best to seek accurate information and advice from your doctor. 

There is light at the end of the tunnel, it's just an emotionally taxing journey.

Discussion
Posted by hl
31/10/21 01:45 AM

Hi!
We are a family in HK. My son is 9 yrs old now. He was certified with profound hearing loss for both sides when he was born.

He took MRI, the nerves are there but they are a bit narrow. We still brought him for cochlear implant when he was 1.5 yrs old. Unfortunately, after the operation, he still had no response to sound.

ABI is the only choice. He took it when he was 2.5 yrs old. He started to response to sound after the operation. He is 9 yrs old now. I can share you some points:

1. the operation is risky. After the first ABI with good results, the doctor recommended us to take ABI for the other side, we rejected it coz I dont want him to take such risk again.

2. the results is good for a kid with profound hearing loss. he started to response to sound after the operation and now, he communicates within the family or with close friends with speech.

3. Still, ABI can't fully recover hearing loss. So, even he has a good result, his hearing ability is still very low compare with normal kids. it is still hard for him to have a good conversation.

4. He started to learn sign language when he was 9mths old. Now, he is very good at sign.

Hope it helps.