Thursday, October 05, 2006

How Did We Learn About Aiden's Hearing Loss?

We learned about Aiden's hearing loss in stages, over the course of many months. Here's the story:

May, 2005: a couple of days before Aiden's discharge from the NICU, he was given a routine Hearing Screening Test from the Ontario Infant Hearing Program. To read more about the Risk Factors for Hearing Loss that were identified in Aiden prior to taking this test, please see our entry entitled, "Why is Aiden Deaf?". Ironically, the results of this test were inconclusive, and Aiden was scheduled for a repeat of this test after discharge on August 9th. At this time, we were told that the tester knew that the hearing test would be inconclusive because Aiden was really squirmy during the test, and was making lots of noises. Apparently, these are not good conditions for the test. The day after the test, I asked Aiden's nurses whether they thought he could hear. They actually thought that he could. One of his nurses commented that Aiden seemed to be comforted by me when I was there, and they attributed this to his hearing my voice.

August 9, 2005: This was our follow up test from the NICU screening test. We were told to bring Aiden to the Belleville General Hospital when he was very, very tired. The ABR (or BERA) test that he had on this day needed to be done while Aiden was asleep. For this test, sounds are placed in the ear, and the brainstem's responses to those sounds are recorded by a computer from electordes taped to Aiden's head. Well, even though Aiden was extremely tired when we brought him in (which, by the way, it is REALLY hard to keep a small baby awake when they are tired), we couldn't keep him asleep. The Audiologist was only able to complete the test for Aiden's Right ear before he woke up. And, despite A LOT of trying (I think Aiden and I were there for 3 hours) we couldn't get Aiden back to sleep. Sadly, the results of the test showed that his right ear was not responding to any sounds. We left this test with the hope that, although the hearing looked damaged in his right ear (and, at the time, we really didn't realize what this really meant) it was entirly possible that there was good hearing in his left ear. We were scheduled for another try at this test on August 25, 2005 in Kingston. At this meeting I was told about the possibility of a Coclear Implant for children with a severe hearing loss who do not even benefit from hearing aids (we had never ever heard of such a thing before). This information at least gave us some hope. Although, truth be told neither Ric nor I had NO idea at the time what it meant to have a deaf son, and all of the implications that it would have upon our lives.

Mid-August, 2005: At home, we all spent a lot of time trying to figure out ourselves whether Aiden had any hearing or not. We would make a loud sound out of his sight, and see if he would respond. Oddly enough (knowing what we know now) sometimes he responded. However, he DIDN'T respond often enough to cause us question. Sometimes we would explain this away with his stay in the NICU. After all, he spent the first 5 1/2 months living in a very busy, very loud, 24-hour a day environment. Maybe he was just used to loud noises, and therefore didn't pay them much attention. It's amazing what will give you hope... And, there were the times that Aiden did respond to noises. For example, I would have sworn that he didn't like the sound of the vacuum cleaner. (Or, maybe I was just looking for a break from the housework :>).

Also, Aiden has always been a VERY visual little boy. He really looks at faces, and takes lots of clues from facial expressions. Sometimes, his quick and clear responses to people's visual cues are easily confused with thinking that Aiden can actually hear you.

All in all, as we waited for the next hearing test, I think we were all of the opinion that we wouldn't have been surprised either way whether Aiden could hear or not.

August 25, 2005: So, our instructions were to again bring Aiden to this test when he was really, really tired. And, given what happened last time, we actually did a great job of this. In fact, I remember the drive up to the test from Belleville to Kingston. We had played and played with Aiden all morning trying to wear him out. Well, that worked. In the car, literally 2 minutes down the road, Aiden fell asleep. I woke him up (he was NOT pleased with me) and we continued on. About half way to Kingston, Aiden fell asleep again and I could not wake him up. Ric actually had to pull over on the side of the 401 so that I could take Aiden out of his car seat to wake him. The poor little guy cried the entire rest of the way to the hospital. But our efforts were in vain. Again, Aiden slept through some of the test, but wouldn't sleep through the whole thing. We still didn't know whether he could hear or not. Our Audiologist's recommendation was that we do the test AGAIN, but do it while he was sedated. The Sedation Hearing Test was booked for October 26th.

October 26, 2005: Well, on this day, with a little help from a sedative, we managed to keep Aiden asleep long enough to complete his hearing test. Sadly, the results were not what we were hoping for. The test they used can measure the brainsteam responses to sounds up to 90 db (pretty loud). Aiden had no reaction to sounds this loud, and at the end of the test he was diagnosed as being severe to profoundly deaf in both ears.

At this same appoinment, we were amazed at the resources that we were immediatly connected with as soon as we had our diagnosis. We were set up with people from Sir James Whitney School for the Deaf, the Canadian Hearing Society, people to help us with special disability funding and more. And, just one week later, we had an appointment for Aiden to be fitted for Hearing Aids.

I don't really know how to describe what the news was like to learn that Aiden was deaf. As you can see, it wasn't like we thought he could hear one minute and learned that he was deaf the next. This progression of slowly learning I think helped to lessen the blow. Plus, in the midst of all of this, we did learn a bit about the Cochlear Implant program which gave us some hope. And, during this time Aiden also saw his Pediatrician in Belleville a lot. This doctor knew what we were going through, and told us that of all of the things that could have befallen Aiden, a hearing loss was one of the "better" ones. Such leaps and bounds are being made in the area of restoring hearing loss that it was something that could be overcome (whereas some of the potential hazzards that Aiden faced could not have been).

Having said that, that October day of Aiden's diagnosis was really hard. I was sad for Aiden, worried for Aiden, and sad for us. Now, here we are almost exactly one year later, filled with hope. We've got such high expectations for his Implant surgery. To think that Aiden will be hearing and speaking well for his age by the time he goes to school is nothing short of totally amazing.

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