Sunday, October 7, 2007

Reuben, can you hear me?

For 5 months, we have been told that Reuben has no auditory nerves based on 2 MRIs at different intervals, 5mm and 2mm, and yet he responded to 75db at his birth hospital in his left ear denoting a severe loss and no response in his right ear denoting a profound loss. The ENT (Ear, Nose, Throat) Drs too were unable to see the cochlears meaning neither hearing aids nor cochlear implants could help provide Reuben any hearing. Our approach towards communication has been basic sign language and eye contract, and Reuben's eyes dart to our lips when we talk to him.

Yet the inconsistency always nagged at us. How could he be severely deaf in one ear and yet have no auditory nerves, the two are contradictory? Severely means something. In the deaf community, hey it's almost a positive, better than profound! I would often cry at the loss of hearing. People want to know what we can "fix" regarding CHARGE and this seemed so savagely cruel, something that can't be fixed. Our then paediatrician would just say, that's too bad. So whilst we have been unable to take him out of the PICU these past 13 weeks for testing, dealing instead with critical survival needs rather than longer term development needs, I have been running my own controlled experiment in his left ear. When asleep, I would turn the handheld TV speaker to the ear and repeatedly, he would wake up. With this tiny morsel, I would never give up hope despite the medical opinion, even from audiologists to whom I've spoken outside the hospital. "There's nothing to work with".

Following his trach change in the OR on Thursday, the above is the news delivered by the ENT Dr. The presence of auditory canals which should contain auditory nerves and the presence of cochlears.

The implications are endless. Mainstream education opens up.

If you have any similar experiences or knowledge to share, please do! Our CHARGE babies consistently prove the Drs wrong do they not?

Guess what I'm going to be hammering on about this week at Children's...


yp said...

I am so profoundly convicted that hearing is so much more than auditory processing - and equally convicted that no matter what Reuben tests indicated, he was responding consistently to environmental sounds - so hurrah for Reuben! :o) He is perfect and whole no matter what the medical measurements, and I celebrate and rejoice the affirmation this new measurement gives you among the professionals to whom you rely for support and care. So much better their enthusiasm as well ....

Polly said...

Haven't been able to check the blog for a while, so apologies for the lack of comments! You've all been very busy in the meantime... so much to catch up on! Great, great news that the trach op was a success, that Reu's soon to move out of PICU and, to top the list, this latest piece of positive news about his hearing situation! How very exciting for you!! Well done you for your constant optimism and perseverance! Love all the photos and it's so nice to see you all looking so well and happy. lots of love, Polly xx

Mary said...

Wonderful news about the hearing situation. Reuben looks so well and happy. A beautiful little boy who knows he is loved. Praise God for the good news. I will pray that it continues.

ellen charge said...

i agree with yuka i know soemtimes hearing is feeling and also seeing i can feel vibrations sometimes whemmy aids r out and when im in the pool i kno whos talking if i catn hear them lol

Geraldine said...

Hey, golden boy! So good to see you all happy and smiling in the photos, they're beautiful!

It does sound very hopeful for Reuben's hearing, the fact that he's responding to external sounds so consistently is really encouraging! We're keeping you all in our thoughts for some encouraging news on this.

skeybunny said...


I hope beyond hope that Reuben does have cochleas and 8th nerves. You are so right in thinking that some hearing is better than none at all (that's become my mantra theses days--"some is better than none" in regards to accomplishing all the therapy exercises, hearing-aid, glasses, and patch wearing for Evan...there are only 24 hours in a day!). Keep learning sign though--I have yet to hear of a family that has regretted that time investment (and several that wished they would have started earlier).


Ericap said...

I had to replay the video three times to fully digest what the doctor was saying! The existence of cochleas and auditory nerves would be such fundamental tools to work with, with implants/aids. I still find it hard to understand how different anatomy has/can be found between the CT and MRI scans.

I love the fact that you felt that you had/wanted to actually video this news.

Whatever, the outcome, with Reubens' sight and touch, he is already communicating his love for you and visa versa.
Love Erica