When our older daughter, Rachel, was born in May 1987, little did my husband and I know what challenges the future held for us. When Rachel was all of a week old, I had already begun to suspect that she couldn't hear. Our apartment was very small, and we kept her infant seat on our dining room table right near the front door. When this heavy door would slam, she wouldn't startle. I voiced my concern to our pediatrician at our first office visit when Rachel was not even three weeks old, but he dismissed my fears, telling me that I was "an overly anxious new mother who didn't understand how newborns react to sound."

By Rachel's next visit at age two months, I insisted she be tested. While my husband and I had tried to mentally prepare ourselves for bad news, nothing could have prepared us for the agonizing two-and-a-half hour wait while the audiologist performed an auditory brainstem response (ABR) hearing test. At the end of the test, she confirmed our fears, telling us that Rachel had a bilateral severe-to-profound hearing loss.

The next two-and-a-half years had us on an emotional roller coaster as we tried to find the best approach to teach Rachel spoken language. We were living in Boston at the time, which was a bastion of Deaf culture. Thus, oral programs were not plentiful, but we very much wanted Rachel to be able to take advantage of all the opportunities the hearing world had to offer.

At the age of three months, Rachel received her first set of hearing aids, body worn aids, which consisted of two boxes with wires running up to button-like earplugs. Because the microphones were on the boxes, Rachel had to wear the boxes on the outside of her clothing. To see one's baby outfitted like this was very difficult, but we wanted her to hear.

When Rachel was ten months old, she cooperated for the first time for a hearing test and proved to have more hearing than we had initially thought. At the same time, she began to show definite responses to sound and received her first set of ear level hearing aids. We thought things were looking up. However, we began to see Rachel's response to sound diminish shortly after that hearing test. Thinking we needed a better program, we traveled to the Helen Beebe Speech and Hearing Center in Pennsylvania to spend a week there learning about the Auditory-Verbal approach. We left so impressed by the children we saw there that we returned home with renewed enthusiasm and motivation and transferred to Jim and Lea Watson's Auditory-Verbal Communication Center in Gloucester, Massachusetts. Unfortunately, Rachel's diminishing responses to sound were a result of her diminishing hearing and not a result of her program. By the age of eighteen months she was totally deaf.

We were faced with a difficult decision at that point. We could attempt to keep Rachel oral, using visual and vibrotactile cues, or turn to sign. We chose the former, reasoning that we still had time to turn to sign if it didn't work. Fortunately, while an oral, vibrotactile approach was a new challenge for Lea Watson, she agreed to keep working with Rachel.

When Rachel was two, Lea was speaking to Judy Simser, an AVI board member and Auditory-Verbal therapist in Ottawa, and learned of the cochlear implant. (AVI is Auditory-Verbal International. It is the association of Auditory-Verbal professionals, parents, and others who follow the Auditory-Verbal Approach to teaching language to hearing impaired children.)

While we knew of the implant's existence, all the professionals we had encountered up to that point had told us that it was something to keep our eyes on for the future, but that most users heard only static at that point. However, Judy Simser told Lea of the remarkable progress she was seeing with one of her students who had received an implant. With her referral to the cochlear implant team at New York University (NYU) Medical Center, we made the trip in October 1989. They quickly identified Rachel as a candidate, introduced us to other children whose performance bowled us over, and scheduled Rachel for surgery eight weeks later. While the cochlear implant was not yet FDA approved for children but was in clinical trials, we decided to make the leap to facilitate Rachel's development of spoken language. We also reasoned that, even if she only heard environmental sounds, it would be more than she currently had.

On December 21, 1989, Rachel became one of the first 200 children in the country to receive the Nucleus 22, the first multichannel cochlear implant available in the U.S. We were all guinea pigs at the time as no one yet knew what to expect from these children. Since then, though, we have never looked back. Whereas prior to her implant Rachel had only mouthed words, within two months post-implant, she found her voice. Soon, she began to demonstrate beginning language. With her newfound hearing, we could also return wholeheartedly to the Auditory-Verbal approach.

In June 1991, when we moved to Atlanta for my husband's new job, we transferred to the The Auditory-Verbal Center of Atlanta (AVCA). Rachel was four-years-old but still had the language of a two-year-old. What followed were six more years of hard work for us and for Rachel, trying to close the gap between her chronological age and her language age. Because she had had no auditory exposure to spoken language until almost the age of three, closing that gap was going to be difficult and would take a long time. When Rachel finally graduated from AVCA at the age of ten, she had caught up in all areas except vocabulary and auditory memory.

When Rachel was almost four, her little brother, Adam, was born. We held our breaths as, at all of five days old, the same audiologist who tested Rachel's hearing tested his. This time, though, the outcome was very different. In all of two minutes, she pronounced his hearing normal in both ears. Previously the "experts" had all told us that Rachel's deafness was most likely the result of a virus I had had when I was five months pregnant. Thus, we took Adam's normal hearing as further proof of this theory.

When Rachel was almost eight-years-old, her little sister, Jessica, was born. She was not yet 24 hours old when her hearing was tested. Despite repeated attempts, the audiologist could get no response to sound in either ear. Rachel's "viral" hearing loss had turned out to be genetic. Not only that, but this time it was worse, because Jessica apparently never had any residual hearing. Although she was fitted with hearing aids at age three weeks, she never demonstrated any response to sound until receiving her cochlear implant.

Of one thing we were certain with Jessica, we didn't want to wait two years to get her hearing and start feeding in language. Despite the reward of watching Rachel's language develop, we knew the hard work it had entailed and the difficulties she still encountered because of her language delay. Thus, we trekked back up to NYU, this time all the way from Atlanta, when Jessica was fourteen months old, as they had already implanted a twenty-month old. While FDA guidelines for implantation specified age two and up, because the device was now FDA approved, surgeons could use their own discretion to implant at younger ages.

I will always remember sitting with Jessica in the surgeon's examining room. He asked me, "So, when do you want to do this?" I answered whenever he was willing, hoping he'd say age eighteen months. I almost fell off the chair when he replied, "How about next month?" I remember beaming and telling him he had a patient! Whatever it took, we were back to commuting to New York for a few months to get Jessica hearing as early as possible.

Jessica's surgery was in May, 1996, when she was 15 months old. At the time, she was either the youngest congenitally deaf child or second youngest (by a week) in the country to receive a cochlear implant, depending upon whose statistic we believed. Jessica received her implant when she was sixteen months younger than Rachel was when she received hers.

We jumped right in with Auditory-Verbal therapy at AVCA with Mary Ann Costin, who had also been Rachel's therapist, as soon as Jessica received her speech processor. The speed of her progress soon amazed everyone. Within two months, she was already demonstrating a clear understanding of language. Her receptive language continued to progress at such a rapid rate that, just past her third birthday, it was already age appropriate.

The one remaining concern we had with Jessica was her expressive language, which lagged severely behind her receptive language. While Rachel's receptive language always exceeded her expressive early on, the disparity had never been as great as Jessica's. Being proactive parents, we couldn't simply sit and wait for the expressive language to come. Having lived through this once before and having now seen so many other implant children at AVCA, we knew that something was not right. Consequently, we visited a pediatric neurologist, who diagnosed Jessica with oral motor apraxia, which-she explained to us is a scrambling of the signal from the brain to the mouth. She assured us that, with oral motor therapy, Jessica would be fine.

Mary Ann referred us to Sharon Wexler, an oral motor therapist, and we started oral motor therapy in April 1998. Within just four months, the difference in Jessica's speech and expressive language was tremendous. Where before she might utter one highly unintelligible word, she began to speak in two to three word phrases with continually increasing intelligibility.

Rachel is now in the seventh grade in our public middle school. She is almost fully mainstreamed, receiving resource help only for language arts. She spent two years working intensively with her resource teacher to increase her vocabulary and close the remaining language gap. She has made honor roll every semester in middle school as a straight A student. In addition, she has run for and won one elected office at school and is currently running for another. Who would ever have thought that my totally deaf daughter would have the self-confidence, clear speech, and social ease to stand up in front of a large group of people and make a speech?

Jessica's annual language evaluation at age 5.9 in November 2000 showed that her language scores, including her expressive language, are between ages 6.0 to age 7.9. Consequently, she will be completing her Auditory-Verbal therapy this spring. Despite the late start with her expressive language, she caught up quickly because all the language was inside waiting for her to figure out how to express it. Her voice quality is totally natural, and she enjoys singing. She has been and will continue to be fully mainstreamed in school.

While lobbying for additional state funding for the Auditory-Verbal Center of Atlanta recently, Jessica didn't hesitate to speak to the state senators and representatives, walking up to each one who came to meet us, holding out her hand and saying, "It's nice to meet you." For the legislators, hearing was believing.

We are thrilled with and proud of both of our girls' progress. However, we have seen the difference in ease of learning language that Jessica's early implant has made for her. The early implant, in combination with Auditory-Verbal therapy, are a perfect match. Since Jessica's surgery, surgeons have implanted children at younger and younger ages, including a six-month-old in Europe. In addition, the FDA has lowered their guidelines to age twelve months for one brand of implant. Because of Jessica's progress, we have become vocal proponents of early implantation, so much so, in fact, that, when speaking to the cochlear implant audiologist at NYU the other day, he teasingly said to me, "If it were up to you, we'd do them in utero!"

Well, he was right... The sooner the better! It's never too early to give a child hearing.

August 1998

Copyright © 1999, 2001, Melissa K. Chaikof