The Cochlear Implant
Many families of deaf children had reported that the second implant center in our area was more liberal with implanting children and later learned it was the leading implant center in the Southeastern part of the USA. We knew that the center we currently went to was very conservative with implanting kids that were not cut and dry candidates. We decided to take Jake to the other center in February of 1998, right after he turned 4 years old.
He completed the cochlear implant evaluations and was still considered a borderline candidate, but the center was starting to implant severe to profound children, especially if their language was lagging like his was. We hadn't even thought much about the issue of the implant with auditory neuropathy since we weren't sure if that was actually his problem after all the insinuations that he didn't actually have auditory neuropathy. The audiology team at this center said that they would prefer to go into this carefully since he did initially have OAE's with an absent ABR .
We were still lost in the conflicting diagnoses we had received. Did he have AN or not? YES! We learned that he still had auditory neuropathy, even though his OAE's were absent now. It was like getting the diagnosis all over again for me. We spoke to Dr. Berlin and learned that there were three or four auditory neuropathy children that had been implanted so far and there wasn't sufficient documentation of successes or failures for us. It was just too soon to tell if it was a good idea in Jake's case.
This time, depression took over and was much worse than it had ever been. The only thing that gave me the will to go on, to live and breathe, was knowing that Jake needed me to succeed.
We decided to try some different strategies at home over the summer to see if he did any better. We also did a lot of soul searching and spent time with our families trying to decide what was best for Jake. He made nice progress but was still falling further and further behind his hearing peers. He couldn't communicate and was becoming more and more withdrawn. He tried very hard to communicate with his neighborhood pals but wound up frustrated when they couldn't understand him. He wanted to speak so badly, I'm sure he knew what he was saying but we couldn't understand what he wanted much of the time. We tried to get him to cue but he was determined to talk and not use cues. He would even tell us not to cue and if I continued he would close his eyes and say "Use WORDS!" But, when we used just words alone he didn't always get the message, got more agitated and the behavior problems escalated. The whole family was becoming distressed with the situation and I figured we had to do something different to try to help him, for our sanity, and his.
In September of 1998, we decided to check into the cochlear implant again but the first available appointment was in October, so we waited. During this time, I began to seek out the other families that had already gotten implants for their AN kids to find out how they were doing at that point. When we returned in October the center agreed that Jake would most likely get some benefit from it. They were pleased with his progress but agreed that he need something done to provide him better access to spoken language. They didn't foresee the audiogram getting any better than his past aided audiograms had been, but felt that it would give him clarity. Finally, someone agreed with me that just because he responded to a sound in the booth didn't mean he could understand speech enough to reproduce it. He had some speech recognition skills in isolation but when you were talking in sentences and there was competing background noise he was lost.
By November's end, we had decided to have him implanted with the Clarion S-Series cochlear implant. I had been very interested in the Med-El implant but it was in clinical trials for children and I knew my insurance wouldn't pay for it. So, the Clarion it was. Jake was excited because most of the deaf children he knows already had an implant and now he was getting one too. I was terrified that it wouldn't work for him but I felt we really had no other choice at the time. We scheduled surgery for two days after his fifth birthday and were very anxious about the outcome. The afternoon before the surgery my health insurance decided that they had approved in error because the Clarion was still in clinical trials for children. This wasn't the case; the implant center had faxed the information to them twice, including the FDA approval letter. After hours of our audiologist and surgeon battling over the phone with those irritating people that call themselves "customer service representatives", the surgery had to be postponed. We could postpone the procedure or keep him without food and water until we heard from the insurance company's home office the next day. With Jake's age and the communication problems, we knew he wouldn't understand why he could not have any food. So we canceled the surgery. I was devastated, I knew it would happen later but I had psyched myself up that it was going to happen then and work out for us. I remember trying to stay calm until I could get off the phone with Carolyn, the audiologist. All is took was for her to say, "Elaine, are you sure you are okay?" to start the river of tears. Of course it was approved the next day, but we had to wait another month to get back in the surgery schedule.
On February 9, 1999 Jake became the ninth known Auditory Neuropathy child to receive a cochlear implant. He was the first AN child implanted with the Clarion device. It was so frightening to take him in that morning. I had watched the movie of his surgeon implanting a child but it was pretty gross thinking about it being your child's head they are cutting and drilling on. We went to the hospital, checked in and went through the routine checks just to be sure he wasn't ill before they took him in. We were led to the operating room waiting area to wait our turn. The nurse anesthetist came to give him Versed, a drug to relax him, and he promptly spit it right back at her, just like I told her he would. He got just enough of it that he was getting a bit drowsy when they came to take him into the surgery suite. I was given a sterile paper suit to wear when I walked him into the operating room to say, "It's going to be okay." He was so brave! He jumped right on the operating table and lay down. They were telling me that they would take this mask and put it over his face to put him under, that he may fight it and that it would knock him out quickly. Jake reached up and grabbed the mask and put it on his own face and smiled at them! It was like he was saying, "Let's get this show on the road." As his little eyes rolled back, I started to cry. I knew I had to leave him, but for a moment I wanted to stop and just look at my precious son. I wondered if it was the right thing to do, how would he feel about it when he is older, what if it doesn't work? It was almost a panic feeling and I couldn't breathe for a moment. I hated having to leave my tiny little boy in there all alone. But I knew that the wonderful surgeon, guided by God's hand, would take care of him for me. I said a silent prayer and left the room.
The nervousness I felt while waiting was pretty intense. It was a long morning but when the surgeon showed me the x-ray of the full electrode array positioned inside Jake's cochlea, I knew it would all be okay.