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I am not a child.
I'd be happy to share with you. My son, Ethan, was born full term, without any apparent problems. He failed his newborn screening, but we were told not to be terribly concerned because many babies do, however, then he failed the follow-up screening at 2 weeks. At 6 weeks he had a full abr (auditory brainstem response test)and we were told that he couldn't hear - he fell into the severe-profound range of impairment. At 7 weeks, we had hearing aids on him and at 10 weeks we were at a cochlear implant center. I think I always knew that Ethan would need a cochlear implant (I tend to totally immerse myself in information, anecdotes, etc. so I can make decisions -- the only way I could figure out how to help my baby was to figure out everything I could on all options available and go from there) A cochlear implant seemed to be his best shot at giving him a "normal" childhood/life. His hearing loss is sensineural (meaning the nerves in his inner ear are either damaged or nonexistent) -- we have no family history of hearing loss.
So...we started therapy at about 12 weeks (in all honesty, it was more about teaching us ways to interact with him and the best ways to build language)at the same time; because of his abr results, we were in our "hearing aid trial" period. At 6 1/2 months we got the go ahead from the team to get an implant. That was wonderful news! However, our health insurance didn't agree and I spent the next couple of months collecting data and fighting them. Luckily, our employer stepped in and paved the way for a different insurance provider to cover us and then the implant. So at 10 months Ethan got his implant, 4 weeks later he was "turned on".
Then the work really started (multiple therapy sessions a week), we really had to work with Ethan to teach him to develop speech and language. At age 3, he received a second implant -- he was one of the first kids in our area to have bilateral implants.
Fast forward to today -- Ethan is doing just fantastic -- and I don't mean fantastic for a child with a hearing loss - I mean truly fantastic. He is 7 and just about to finish 1st grade. At age 2 and 1/2 he was fully caught up for speech and language and at 3 he entered pre-school just like any other child. He started kindergarten at age 5 and is doing really well in 1st grade. He does use an FM system for school, but not at any other time. We frequently hear from people who haven't met him -- "we had no idea that he can't hear normally". His audiograms show that he hears within normal ranges (i.e.he falls below the 20db mark) and when we do testing he consistently scores 95% or above in quiet settings and 86-90% in noisy settings. In fact when he was younger, he used to correct his little brother's speech (his brother has normal hearing)!
Thanks for listening to me brag on my baby -- I really am proud of him.
Here's some things that you should know about your son --He's going to be fine! He may have to work a little harder at first (but being a preemie -- he's already used to that), but his hearing impairment won't stand in his way.The surgery for cochlear implants is really not as scary as it sounds, and the recovery is super quick (at ten months, Ethan was playing outside the same day and on day two, if you couldn't see the incision, you never would have known he had anything done At age three, he had a slightly rougher time (the anesthesia made him sick), but he was still up playing with his trains and stuff the next day)
Get comfortable with the speech and language pathologists and audiologists and doctors and make sure your son likes them as well -- you'll be spending a lot of time with them. Ask questions, as many as you have, as many times as you need to. Our doctor still teases me about all the questions that I asked (lovingly, I'm sure :).
Please ask as many questions of me as you need. While I am no expert in the sciences, I do have first hand experience. Again, some things may be slightly different for you with Auditory Neuropathy as opposed to sensineural hearing loss, but hopefully I can still help you.
My son Maclain is 6 1/2 months old ( corrected) and has been diagnosed with Auditory Neuropathy. We are now part of the cochlear implant assesment program at Sick Kids. He is getting hearing aides in June to see how he does with those and an MRI on May 27th to check his nerve etc
His loss is severe/profound
Mom to Chase 11-20-2005 ( and he lives up to his name) and Maclain 08-02-2007 born 10 weeks early