Lea was a very active member of Auditory-Verbal International (AVI). One day, she was speaking on the phone with another AVI board member, Judy Simser, in Ottawa. Lea mentioned that she was working with a child who was totally deaf. Judy told Lea that she, too, had a child who was totally deaf, and the family had gone to New York to the cochlear implant center at New York University and gotten her a cochlear implant. By this time, it was no longer a single channel cochlear implant but, instead, was the Nucleus 22, the first multichannel cochlear implant. Judy told Lea that she should pass on the information about the NYU center to us because she was very impressed with what her student was hearing. This was in August of 1989. In October, we spent three days in New York with Rachel, having her undergo evaluations not just by the audiologists but also by therapist at the League for the Hard of Hearing and by a child psychologist.
While were at the League, the therapist there introduced us to a mother and her daughter. The mother was Melody James, and her daughter was Caitlin Parton, then four years old. Caitlin was hearing and speaking as well as any four year old. We were beyond amazed and knew from that moment that this was without a doubt what we wanted for Rachel. Two years after we met Melody and Caitlin, they appeared on “60 Minutes” and showed the world the potential of the cochlear implant for children. Over the years, Melody has become one of my closest friends and my second mentor. Cochlear implants were still in phase III clinical trials for children, and so Caitlin was the only child I knew who followed a similar path to Rachel with spoken language and full mainstreaming, and I looked to Melody for guidance at every new stage along the way. I still do! Caitlin has inspired us through the years and let us know what was possible, from playing the piano to attending a top university.
At the end of our three days at NYU, Bill Shapiro, the head audiologist, told us that Rachel was definitely a candidate for a cochlear implant. FDA protocol at that time was very strict, and so Rachel had to spend the next eight weeks wearing a body worn FM hearing aid at all times. If, at the end of the eight weeks, she still showed no response to sound, then she would definitely be a candidate. However, Bill was so sure that the FM would not make a difference that he scheduled Rachel’s surgery for eight weeks and one day later.
Eight weeks later, we returned to NYU and, as suspected, Rachel still couldn’t hear anything, even with the powerful FM hearing aid, which we happily returned to the League’s audiologist. That evening, we checked Rachel into the hospital. In 1989, children actually checked in the night before their surgery. The next morning, Rachel was prepped for surgery, and then we got the news that a water main had ruptured in front of the hospital, cutting off power to the hospital. While the hospital had a backup generator, it did not supply sufficient power for the autoclave, the machine that sterilizes surgical instruments. While the surgeon had one set of instruments already sterilized, he did not have a backup set. We waited for hours, with me getting more and more upset as time went by. I had taken four weeks off of work prior to Rachel’s surgery because she was in group daycare three days a week and was always catching a cold or other minor illness, which would have postponed her surgery. Thus, she and I had spent the past four weeks home to keep her healthy. I had visions of the hospital sending us home and rescheduling. Fortunately, we were in New York, which had multiple cochlear implant centers, something very unusual at that time. Our surgeon called one of the other implant centers and was able to borrow a backup set of instruments. So, about five hours late but, nonetheless, on the day that she was scheduled, Rachel finally received her cochlear implant. The surgeon was able to insert all the electrodes and pronounced the surgery a success. Because Elliot was a surgical resident, he even pulled him aside at the end to show him Rachel’s head xray showing the implant right in place.
Today, cochlear implant surgery is outpatient, with children staying 23 hours to include one night or even going home the same day. However, back then it was four nights in the hospital, including the night before surgery. Rachel had a drain coming out of her incision, and she could not be released until the incision stopped draining. They also kept the IV in her hand for that entire time, and, at one point, the IV needle slipped out. Replacing that needle was the most traumatic part of the entire surgery and hospital stay for Rachel. A medical student, intern and resident tried to put the IV back in and were not experienced enough and kept poking and hurting Rachel, who was crying. Elliot was no longer there. He was still in his surgical residency, and taking any time off was almost unheard of. I was there with my parents and my father-in-law. My mother saw what was going on and became very upset and went and found someone who knew what they were doing. For a few weeks afterwards, whenever anyone asked Rachel to see her “boo boo,” she never pointed to her head but, rather, to the bruise on the back of her hand.
Following Rachel’s release from the hospital, I went to Baltimore with my parents for a week to have some help while Rachel recovered. Then, three weeks after that, my mother met me in New York for the activation of Rachel’s implant.
We had no idea what to expect. There were so few children with cochlear implants then. In fact, at one point Cochlear sent out a list to the families with the first 200 children in the U.S. and Canada to receive a cochlear implant, and Rachel was on that list. All that Bill Shapiro could tell us was that Rachel would hear environmental sounds. The cochlear implant team could give us no guarantees. My mother and I sat in the little room with the audiologist and the computer with bated breath. When he started stimulating the first electrode and reached the point where Rachel could hear the signal, she started to cry. My mother and I were cheering! Her crying meant that she could hear! She proceeded to react the same way to each additional electrode.
At that time, all of the electrodes were not programmed the first day. Instead, programming occurred gradually over three days. On the last day, Bill turned on the four highest frequency electrodes. A speech pathologist from the League was there to help with the programming. After Bill finished programming Rachel, she said, “ssss.” Rachel was sitting in my lap and turned around and hit me on the mouth. We all started laughing. We were so thrilled. Not only had Rachel heard it but also she recognized where it came from. Even if she got the person wrong, she knew that someone was speaking.
Bill warned us that, although Rachel appeared to hear in that little room, when we left she would likely appear as deaf as before for awhile as her brain learned to make sense of the sound from the CI. This proved to be true. However, after two weeks, right before we were supposed to return to New York for Rachel’s second mapping, she began to respond to loud sounds by turning her head to look for them. At her second mapping, Bill found that her tolerance for sound had greatly increased, and he was able to give her considerably more power, which meant considerably more hearing.
Within a week of her second mapping, Rachel began to respond consistently not just to environmental sounds but also to voices. That marked a turning point for us, and we were able to wholeheartedly return to Auditory-Verbal therapy with Lea, this time with hearing.
From that point in, we never looked back. Before “sandwiching” was a known technique, it’s what I decided on my own to use with Rachel. I would say something to her with my hand in front of my mouth so that she could focus just on listening to what I said. Then I’d say it again, letting her lipread, and then I’d repeat it one more time with my mouth covered. In this way, Rachel transitioned from lipreading to having fully auditory language within six months of receiving her CI. In addition, two months after beginning to hear, Rachel began to use her voice. I remember the first time I was able to reason with her. She wanted to do something, and I held up one finger telling her that first we had to do something else, then we could do what she wanted. I held up two fingers for that. I saw the light bulb go off as she smiled and repeated what I had said over and over again letting me know that she’d gotten it.
I do need to add, though, that it was not all easy with Rachel. She was always a very strong willed child who wanted control. She would fight me about various things and would never give in. For example, she refused to take medicine, and trying to disguise it in applesauce or even chocolate did not work. I would have to force it down her, sometimes by lying her on the floor with her arms by her side with me sitting not on her but with my legs on either side of her holding her arms to her sides while I used by hands to hold onto her chin and slowly pour the medicine into her mouth. She also fought bedtime for years, first flinging herself out of her crib and then refusing to stay in her bed. This would go on for an hour-and-a-half every night, with Elliot and me constantly picking her up and returning her to her bed until she would finally fall asleep exhausted on the floor, and we’d then put her into her bed. We finally put a gate in the door of her room, but then she started climbing over that, and so we put a second gate on top of that, and she would stand there crying and shaking the gate. Not immediately, but early into her time with her cochlear implant, Rachel decided she would fight me on putting her cochlear implant processor on in the mornings. It was not about not wanting to hear because she was not only fine with it once it was on but would then fight me about taking it off at night. For awhile, we had to let her go to sleep with it on and remove it once she was asleep. However, to put it on her in the morning I had to resort to the same sitting over her method that I used to give her medicine. I used to tell myself then that her strong willed personality would stand her in good stead when she was older, and I was so right as her motivation and determination have taken her far, but it was not fun then!