Having discussed implants with many families before and after making our choice for our daughter, we know what a heart wrenching decision it can be. Not just the "yes" or "no", but when, with who, with what, and what about follow up are all questions that need to be answered. If the whole backdrop of the inquiry occurs when someone you love has had a new diagnosis or a recent progression in hearing loss, then grief, worry, or even a sense of urgency can make the questions all the more complicated.
Families can find a great deal of information available, but that information is most commonly found through implant manufacturers, or clearly by the "pro" or "against" implant camps. What we wished we would have had is a description of what a family can expect during the process after we made our decisions.
Maddie, at seven, had used hearing aids well since her identification with severe to profound hearing loss at age 16 months. She lost all useable hearing over a month's time. Though we all signed, our family didn't always ensure her access to every family conversation and the comings and goings of a busy household. Certainly that was the goal, but we were reminded daily of moments she missed. (Can anyone else relate to that?) Maddie used speech well, so we had the added difficulty of "no one to practice signing with" - a strange phenomenon that developed over the past few years. She really had two primary modes of communication: mostly talking to express and using the whole package of residual hearing, signing and speechreading to understand.
She missed hearing the phone ring, the doorbell, the garage door opening, and catching enough sound and speechreading to fill in the gaps of communication. We saw her getting edgier and more insistent about an implant by the day. We saw her speech begin to change. She was unable to pronounce some new words despite being able to read them. We hadn't realized how much she depended on her residual hearing. Every time we were on the phone in those months, she would imperiously ask us "are you scheduling my implant?"
Saying "yes" to the implant took us four long months. We talked to deaf adults who had chosen the surgery, or who had not; we spent time talking to the different manufacturer's representatives, to other families, to our audiologists and teachers, and even those anonymous late night message boards. I had to come to grips with fear of surgery and anesthesia, and the idea that we didn't want our child to feel that we had tried to "fix" her. We worried about how an artificial device could keep working for the decades of a child's future life. We tried to ascertain how Maddie would respond in the future if we didn't pursue the implant.or even if we did. In the end, she led the way. She had had the experience of more hearing and missed it, and was very unsettled to have sign as the only option in her world. We told her that she may not like the sound, and she was adamant about going ahead.
Watching other kids with implants, I saw how little they had to work to receive and interpret sound. This was true even for kids who would not be called "successes" by their implant teams. They still had access to sounds in their environment, whether or not they really used the implant as hoped for. Something we learned that surprised us was the finding that a child doesn't lose all residual hearing, but just response to sound limited to the point of insertion of the electrode array. One might wonder why that even mattered when response to sound had dropped so low, but it was an oddly comforting thought. Another surprise was how well she was expected to do with the implant. I found that our own expectations paled in comparison. While far older than the "ideal candidate", Maddie had meaningful experience with sound and had a great foundation of language. According to Mary Koch, nationally - known expert on CI rehabilitation, it would perhaps be an easier task for her to fit the new perception of sound into meaning with her use of simultaneous communication (speech and SEE) as she made the switch to auditory channels. This has proven to be the case, as Maddie had an easy transition to the implant, using it full time from the first day, other than a few loud days in the school cafeteria. Now she knows why the cafeteria staff get so grumpy.
The surgery became possible during the school year, which we liked because there would be extra support for the early auditory training period. That, and Maddie would have despised not being able to go swimming for a month in the summer. What helped us through surgery? Maddie, her siblings and I were very much comforted by a thorough tour and explanation of the routine at the hospital well before surgery. We are grateful to our friends who recommended taking Maddie's favorite blanket - a new Hello Kitty fleece that her teacher had just given her to mark the occasion. Nothing like a little hot pink to liven up the hospital room and make anyone look and feel better despite the pale gowns and tubes. We are grateful for the friends who supported us in the waiting room. While we didn't ask anyone to come - wanting to hole up alone and not entertain anyone, we were so comforted by their presence and their practical help in getting us lunch so we didn't have to leave the area. We worried that Maddie would be seen as "the cochlear implant patient in OR #4", so we asked for a support person during surgery for our own comfort, as well as to sign with Maddie between the time she woke up and the time they allowed us back in the room. This generous friend was also under instructions to whisper to Maddie that she would wake up hungry and thirsty and pain free. (The only pain she had was the growling of her stomach and her attitude until she was allowed to devour two popsicles.) We wished that we had arranged for the after-surgery medication scripts beforehand, so that we could have gone straight home from the hospital. We also wouldn't have thought of packing easy-to-get-over-the-head shirts for the week or so after. We were also pleased that Maddie could choose how she wanted her anesthesia (mask or IV) and all her stuffed animals also got a hospital bracelet. And like many other parents, we slept little the night before. Maddie, however, was excited and took the time to dress up. In her pictures, she smiles like she's going on vacation. Her dad and I look exhausted before it even began.
We had set our expectations so low for this occasion that it took us a little time to realize that Maddie actually could discriminate our voices, understand some words, and had full access, though understanding was going to be a process, of many environmental sounds she had never experienced before. My favorite quote of the day was, "Mom, I can hear the /s/ in Spring!" We had fully expected that she might hate the new sounds and toss the thing across the room, so her obvious delight was startling. We quickly wore out her patience in asking her "what do you hear now" as we found her experience of the ice machine, the squirrel scolding her, the water faucet, and listening to her little sister singing so amazing.
Nearly a year and many therapies and mappings later, we live daily with the paradox of having a deaf child who can hear us call her from downstairs, who is enjoying music, who overhears words on the radio, and who catches bits of conversation. We are thrilled with the evidence of incidental learning, even if it is overhearing plans for date night for mom and dad. We've had conversations I can't imagine naturally occurring before the implant, such as when she asked her dad about the noise in the car, and he ended up pulling off the road and demonstrating the blinkers and discussing how we communicate with other cars. Or the discussion about how we CAN'T hear things like people talking too far away or the ballet shoes on the dance floor. Maddie's Coca Earplant (her little sister's verbal version of the word) is only a tool, though an incredible tool, to keep her connected to us even when our hands are full and signing has to wait a minute or two.
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