Discovering that Colton is Deaf

No brother will ever be loved as much as Colton is loved by his brothers. They never did get to visit him again in the NICU. We bring him home and they get to see him and hold him. It is a tough transition at home, but we survive. Colton is on oxygen and so we don’t go very far. The therapists start coming to visit and help with what they can. Colton never passed his newborn hearing screen, but that isn't unusual for a premature baby, so we don't worry about it much. The therapists all ring bells and try to get his attention and they notice he doesn't respond, but again, not unusual for a baby. Colton was only 3 lbs 15 oz when we brought him home from the NICU. He is so little and is pretty far behind on his development so we try not to stress out too much. We do have to go back to try his newborn hearing screen again. 6 hours later we come home with him still not passing, but no more info than that. I am overwhelmed. Colton is on 6 medications, RSV season is starting and Colton is a very hard baby. I don't really believe that Colton has a hearing loss. We decide that we will deal with the medical issues and worry about his hearing later.

Spring time 2010, Colton is 1. He is off all the medications. Still on oxygen, but we are used to it. It doesn’t intimidate us much. We try for our first hearing test. An ABR (Auditory Brainstem Response) is a test where electrodes are positioned on the head, and they record electrical activity in the nerve for hearing, and in the brain, in response to sounds. This test is capable of determining complications in the inner ear, the auditory nerve and the hearing center of the brain.We are unable to do the test because Colton has fluid in his ears. We try several rounds of antibiotics but they don’t help. So the ENT decides he needs tubes.

Almost exactly 1 year to the day from his heart surgery, we are sitting in the same waiting room while our son is in surgery for ear tubes. Since he is under anesthesia, they also do an ABR at the same time. We are told that Colton has a hearing loss that is moderate-severe. We go home feeling that we can handle this. Then we get the official report in the mail a few weeks later. It says that Colton has a profound hearing loss. We are shocked. This is so different than what we were told.

Colton also has booth tests. This is where we are in a booth and we have Colton on our lap. They pipe a sound in on one side of the other, then they will have a visual stimulus like a bear that lights up. The idea is to do the sound first, then the visual and see if they will start to look for the visual after hearing the sound. Our booth tests don't go well and the audiologist agrees that Colton has a profound hearing loss.

We have an MRI so we can see if the middle ear is formed correctly and since he will be sedated, they order another ABR. This is when we are told about the Auditory Neuropathy.
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Auditory Neuropathy in a nutshell is when there is some problem with some synchronization in the ear. Kind of like a faulty speaker wire, the sound will come and go. The ear works, it just can’t send the message to the brain. Some kids, when the sound comes in (we call them good hearing days) can hear pretty well. Colton does not, even on a good hearing day. He is profoundly deaf and the Auditory Neuropathy adds a little bit of a complication. It means that things might not work they same as they do for others.

I think I am still in denial. I don’ t want to admit that my son is deaf. I wake up in the morning thinking that somehow, things will be different today. My son will be able to hear my voice. I think that it really hit me one day when I was doing some house cleaning and I had some music on. I suddenly realized that my son couldn’t hear. Would never hear. All those times I had rocked him and sung to him, he couldn’t hear me. When I whispered to him that everything would be okay, that he was a fighter, that I loved him, he couldn’t hear me. My son is deaf.