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When I founded Cochlear Implant Online ten years ago in 2001, my vision of the website was to create better awareness about cochlear implants and of deaf children learning to hear and speak. The FDA first approved multichannel cochlear implants for marketing in children in June 1990. Ten years ago, the very first generation of multichannel cochlear implant recipients were still growing up, as we were all in middle school or high school and wondering what the future would hold for us as adults. On the other hand, at that point, we already saw that cochlear implants had given us so much more potential than anyone had imagined – we were mainstreamed in school, educated on the same level or higher than our normally hearing peers, communicating with friends, families and strangers with ease through hearing and speaking, playing musical instruments, conversing on the phone, and leading fulfilling lives.
Professionals, including therapists, audiologists and surgeons, did not envision that we’d be able to master these skills. They told our parents that we, the children who were implanted as part of the clinical trials for multichannel cochlear implants, would be able to hear environmental sounds at the most and would not be able to understand any words; however, it would be better than no hearing at all at least in terms of our safety as we would hear fire alarms and sirens.
Dr. Thomas Balkany, a very prominent cochlear implant surgeon at Miami University who has been working with cochlear implants, both single channel and multichannel, since the ’70′s said, “I told them no, I don’t think that anyone will ever be able to understand any words with the cochlear implant.” I know it’s hard to believe that in those days, professionals had very low expectations, but really, nobody knew because we were all guinea pigs. “We didn’t have much data at that point, but it is surprising to recall how some people then were very skeptical and are now fervent supporters,” said Todd Houston, Auditory-Verbal therapist at Akron University.
“The road to helping deaf children was a circuitous one,” said Professor Graeme Clark, inventor of multi-channel cochlear implant from Australia, “It was only after I became confident of the benefit of our multiple electrode system for adults who could hear before deafness set in, that I really became hopeful that the same system would work for children born deaf, who had never been exposed to sound.” 1
Prior to the invention of multi-channel cochlear implants, single channel cochlear implants, invented by Dr. William House, were being implanted in both adults and children, but they were not too successful because recipients could not comprehend speech well. “Speech recognition was rare and highly limited with the single channel devices. They were mostly an aid to speech reading. Pitch could be distinguished by some single channel users,” said Dr. Balkany. By the end of the 1980′s, a few cochlear implant surgeons were conducting studies on multichannel cochlear implants in children. “It was so much better than what we had been using [single channel], but there were also many lessons to be learned,” said Dr. Balkany. “How to deal with ear infections, tubes, meningitis, malformations, ossification of the cochlea, the skin incision, perfecting the surgery, defending parents from the Deaf community were some,” he said.
New York University (NYU), one of the first hospitals in the United States to pursue multichannel cochlear implantation, saw the potential of the multichannel cochlear implant and so skipped over the single channel cochlear implant, according to Susan Waltzman, Ph.D. Co-Director of NYU Cochlear Implant Center. “We went to several meetings and visited research labs and decided to begin with the multichannel device and not the single channel implant,” said Dr. Waltzman.
Professor Clark also posed many questions: “Had we developed a system that would only work if the fine connections in the brain for handling speech had been established through prior exposure to sound? Furthermore, would the device be reliable for use in children? A fault in an adult could be explained to them as part of the risk to be accepted. But children are not mature enough to make decisions that will affect their whole lives, and a a failure could have a serious psychological effect.” 2
Initially, some hospitals also required children to have been born with normal hearing in order to be candidates for cochlear implants. NYU was one of these centers. Dr. Waltzman states, “At the beginning, the children had to be postlingually deafened and many of them were deafened due to meningitis which, of course, is no longer the case today. Those results were were mixed due to ossification but when we opened up the criteria further, the results were quite compelling.”
Jolie Fainberg, a pediatric cochlear implant audiologist who began her career at the House Ear Institute in Los Angeles in the ’80′s said because standards were much lower, “We were excited when kid could discriminate between four spondees, but eventually, we raised the bar to include single word discrimination.”
Because of the low expectations, one pediatric cochlear implant pioneer who was implanted in 1989, Elizabeth Tricase Lance, was still relying on sign language interpreters in school until 2nd grade when her potential of being able to hear teachers without an interpreter was finally realized. Today, she is communicating with ease on the telephone.
While my parents heard about cochlear implants long before I first received one at the age of two and a half in 1989, they were told by many professionals that the technology had a long way to go as they thought cochlear implants didn’t work too well, and it was something to keep in mind for the future. One audiologist told my parents that maintaining cochlear implants was so expensive that it wasn’t worth the cost and mentioned that the cost of the coil was 15 dollars at the time, which believe or not, was considered ridiculously expensive! Furthermore, in 1988, Dr. Jerome Goldstein testified at the senate by stating, “While there have been a few extraordinary advances such as the cochlear implant, this form of treatment for the profoundly deaf is costly and limited to a small number of patients.” 3 Today, coils now cost over 100 dollars!
Fortunately, two pediatric cochlear implant pioneers inspired and pushed my parents to try to pursue the path to get a cochlear implant for me. A few months before I received my first cochlear implant in 1989, my Auditory-Verbal therapist, Lea Watson, was speaking on the phone with Judy Simser, an Auditory-Verbal therapist in Canada, who raved about her four year-old client who was implanted shortly beforehand and was making good progress. A few years ago, I finally learned the name of this client, Krista Donaldson, through a listserv for Usher Syndrome as we were both coincidentally diagnosed with Usher Syndrome at around the same time in 2006. Krista is thriving as she acquired three university degrees and has plans to be a teacher of deaf. “I cannot imagine how different my life would be, both academically and socially, if I did not receive a cochlear implant at 4 years old,” said Donaldson.
Simser shared her experience of working with her first pediatric cochlear implant recipient: “I was in awe with what they could hear. David Carter, one of the early recipients from Sydney, Australia was my first CI user who was coming with his Mother to Canada yearly to work with me. I had taught him with limited hearing for three years but when he received the CI at the age of six I couldn’t believe that he could hear every sound in the speech range; he had amazing hearing potential. He has very intelligible speech with a good Australian accent!”
Aside from many professionals who were skeptical about cochlear implants, the “D”eaf community was most certainly hostile to pediatric cochlear implantation. “The capital D Deaf community…thought that if we would wait until the kids turned 18, then they would be adults and could make a mature decision for themselves,” said Dr. Balkany.
Just over 20 years later, many of us pediatric cochlear implant recipients speak fervently of being grateful for our parents’ decision to be implanted as young children. “Because I can hear sound, I can wake up to the world filled with beautiful sounds. I am forever thankful,” said Lance.
The mother of Pia O’Donnell, formerly Pia Jeffrey, fought to have her daughter participate in the clinical trials. Finally in 1987, O’Donnell became the second child in the world who was born deaf to receive a cochlear implant. O’Donnell said, “I am very glad that my mum didn’t give up to give me a fantastic opportunity to hear. I love her for that.”
Erik N., a pediatric cochlear implant recipient who was implanted in 1988, said, “Being able to hear and speak means the world to me.”
Mark Leekoff, a pediatric cochlear implant recipient who was implanted in 1989, said, “My cochlear implant has afforded me the opportunity to communicate with the best of both the hearing and Deaf worlds and succeed as a person both academically and socially.”
Now that all of us are adults and have received bachelor’s degrees, we are thriving in navigating in the real world. Patty Heard, a pediatric cochlear implant recipient who was implanted in 1989, has a full time job in a tough field that involves working with clients in person and over the phone. Leekoff is in medical school. Lance is married to a husband who has normal hearing, has a daughter and is a full time PE coach at a local mainstream school.
“It is nothing short of miraculous. We are living with the millennials, who have grown up in the technological revolution and who have come to expect speed with everything,” said Warren Estabrooks, an Auditory-Verbal therapist from Toronto, Canada who had a client who is a pediatric cochlear implant pioneer, “It seems to me that the CI technology is keeping up, but it is important for professionals to keep focused on the family system and how all this impacts the family dynamics. Cochlear implant technology will just get better and the future will be brighter than most of us with ever realize.”
When all of us cochlear implant pediatric pioneers were first activated, we heard through sound processors that had a heavy box with a long cable running down in front of our chest or our back. Now today, we all wear behind the ear processors. I remember the day when I was able to finally get rid of the body worn processor when I was 13 years old. I was so thrilled to finally be able to wear spaghetti strap tank tops! “Of course, the miniaturization of the CI is a big plus,” said Jolie, “[However], the difficulty now is getting battery technology to keep up with chip technology. Most CI sound processors are half the size of the battery compartment and for some patients who require a lot of power, they may need to change their batteries before the end of a day.”
“The change in cochlear implants over the past 25 years has been amazing. I think the competition of the 3 CI companies has contributed to that change, particularly in the past ten years,” said Fainberg, “Computer technology has changed the way we do mapping as well. We used to program in DOS, now everything is window based. The only down side I would say is that new CI audiologists don’t ‘have to’ learn the basics of CI programming and can lack the knowledge to troubleshoot difficult cases. Us ‘older’ CI audiologists had to learn how to program from scratch, not just push a button to fix a problem.”
Aside from the changes in the sound processors, MAPping techniques, and internal cochlear implants, many children today are receiving their cochlear implants younger than the pediatric pioneers who could not receive a cochlear implant younger than the age of two years old the time. When the FDA approved cochlear implants for marketing in children in June 1990, the age of implantation was still restricted to no younger than two years old. However, nearly six years later, many surgeons began to pursue studies in implanting children younger than two years old. My sister, Jessica, was implanted at the age of 15 months in 1996 and, at the time, was the youngest child in the country to receive an implant. Jessica is a testament to the benefits of early cochlear implantation as her language has been at or above age level since before starting kindergarten, whereas I still had slight language delay through high school.
As studies proved that cochlear implantation as early as possible during the first frew critical language learning years is crucial for learning listening and spoken language, the FDA finally lowered the age restriction to 12 months in 2000. While the FDA still restricts the age of implantation to no younger than 12 months, many surgeons around the world are implanting children younger than 12 months at their own discretion. The differences in children being implanted at six months versus 12 months are astonishing. The younger the children are implanted, the sooner they are kicked out of therapy. O’Donnell, who has a child who was also born deaf and received bilateral cochlear implants at a very young age said, “He’s doing so much better than me!”
Fainberg said, “Most of the early speech perception tests are now obsolete because kids pass that level of perception so quickly. The difficulty is finding tests to measure the high performance of many of our CI kids.” Fainberg further commented, “I have many patients learning another language, some from the very beginning (bilingual households) and they do just great.”
Because of the unknown risks of cochlear implants, all of us early cochlear implant recipients were allowed to be implanted in only one ear. It wasn’t until early 2000′s when clinics in Europe finally began to pursue bilateral implantation. “I recall…at a CI conference when some European doctors were advocating bilateral implantation, the American doctors were reluctant to endorse it at that point,” said Houston. It wasn’t until around the mid 2000′s that bilateral implantation was finally pursued in the United States. When I first looked into bilateral implantation in early 2000, many professionals and my parents were against the idea of my getting a second implant as they were unsure of whether I would benefit from it or not as I had been completely deaf in that ear for 17 years. I was finally able to pursue it in 2004, and 7 years later, I do not regret my decision as my hearing has improved tremendously. Bilateral implantation is now the standard of care for most recipients.
“Since history forgotten is a future loss, I think we need to pay homage to all those professionals…Doreen Pollack, Helen Beebe, Daniel Ling, Susann Schmid-Giovannini, and Dr. Noel Cohen, Bill Shapiro, Diane Brackett and Susan Waltzman…for changing many lives for the better,” said Estabrooks.
“I am grateful for the opportunities that my implant has enabled me to take advantage of, the past twenty four years. I look forward to another twenty four years with my implant and learning more each year and continuing to improve!” said Tim Brandau, a pediatric cochlear implant recipient who was implanted in 1987.
“To this day, every time I have A-V therapy with a cochlear implant user I just tingle and smile at their hearing abilities. I never thought that I would see such hearing potential in our children with profound hearing loss,” said Simser.
I hope that this story and the video will help create a greater awareness and realization of what cochlear implants can do for deaf children today, to give them access to learning listening and spoken language as long as their parents follow through with appropriate rehabilitation.
In celebration of Cochlear Implant Online’s 10th anniversary, I am going to recognize and celebrate the history of cochlear implants by showing how they have come so far within 20+ years for pediatric recipients. Over the next several days, there will be series of articles which will include stories from pediatric cochlear implant pioneers who were implanted before the government approval in June 1990. Furthermore, I will include an article about problems that we still have to combat today and our goals and visions for the next decade.
I would also like to give special thanks to all the recipients and professionals for their participation.
- Sounds from Silence: Graeme Clark on the Bionic Ear Story: 164 – 166 ↩
- Sounds from Silence: Graeme Clark on the Bionic Ear Story: 166 ↩
- Jerome Goldstein. Testimony before the hearing of the Labor, Health, Human Services and Education Subcommittee, U.S. Senate Committee on Appropriations, “Labor, Health, Human Services, and Related Agencies Appropriations for FY 1989,” May 26; June 7-9, 1988, p. 290 ↩