Tip:
Highlight text to annotate it
X
>> MELODY PARTON JAMES: Hi. Thank you, and it's always an honor to be my daughter's back-up
band. Caitlin wished she could have been here today. One of life's greatest gifts is working
hard at something worth doing. Not everyone gets that chance. As the mother of Caitlin
Parton I'm happy to yell from the mountain tops. What Noel Cohen dedicated his life and
talents to is worth doing. One of the first otolaryngologists to champion the cochlear
implant, he performed that surgery on our toddler, Caitlin, who at the time, almost
25 years ago was one of the first and youngest children to have the procedure. What was the
job worth? Simply, it gave our child wings. It expanded horizons and lead to dreams enacted
and coming true. My husband, Steve, and I said we were at the right place at the right
time in New York City, 1987. Caitlin's meningitis and her subsequent diagnosis of profound deafness
took us by shock. We found our way to the League for the Hard of Hearing, now the Center
for Hearing and Communication, and a great deal began to happen fast. The cochlear implant
was unfortunately under investigative status with the FDA. Clinical trials were beginning.
The League began a unique partnership with NYU to identify the initial candidates: deaf
toddlers who had been born hearing. Caitlin was declared a perfect candidate. Our journey
with the new technology began. It involved surgery, never an easy decision for your child.
A heavy box the size of my palm. Demanding to be fed three batteries a day. It involved
frequent mappings with puzzling and, at times, pained responses of a toddler without the
language to tell the audiologist stop. It involved sudden device shut-downs in the midst
of humid, sweaty field day events or when our child took a ride down plastic slide.
It involved daily work for Caitlin to develop language and to learn to speak so others could
understand her. These challenges stretched before us like a vast unknown territory. Dr.
Cohen joked he did the easy part. There were no other families to talk with.
No children to observe, no research studies to pore over and compare. No twitter. No one
to look at and speak to and share experiences with. There was no track record for the children.
It meant courage, a leap of faith and deep trust for the professionals we worked with.
Together we forged an extraordinary team. It changed our lives. And provided all of
us work worthy of doing. At the time it felt like skating out onto thin ice but I can't
think of skating with anyone more reassuring than Dr. Noel Cohen. As I look out on the
faces today, what's almost impossible to imagine, is the fact that there were very few facts
known about the benefits of the device and its impact on the strenuous task on teaching
a deaf toddler to listen and to speak. We weighed the decision, we changed our priorities
and plans and we went skating. The collaboration of all our efforts got attention. As Caitlin
kept surpassing the early expectations and became part of the promising statistics, we
became part of the experiences that changed deafness forever. I remember meeting Noel
Cohen, the first time after his warm up acts. His eyes were gentle and twinkled, he smiled
easily and there was nothing hard-sell about him. He inspired confidence quietly. I remember
talking to him on the phone for a reason I no longer remember for two hours. We decided
to change the ear he would implant. He was reassuring and a doctor available in the wee
hours of the night. Many parents speak of the grief they feel upon learning of their
baby's hearing loss. Suddenly there seems an unimaginable divide. So much of what we'd
share with our child seemed threatened. Sounds we loved and took for granted all came flooding
in. For me it felt like steep walls were suddenly in the path of our child's possibilities and
the dreams we had yet to articulate for her. We felt access to sound, spoken word and music
were suddenly paramount to all we held dear. With his incisive hands, Noel Cohen changed
that. He gave our child the gift of sound. It was also a serious organized effort by
the ascending deaf culture to stop the cochlear implant. Stop the research to improve the
device and stop parents from having the right to make the decision on behalf of their child
who was deaf. So one of my fondest memories of Dr. Cohen is being on the barricades with
him to counter those arguments. I remember both of us speaking at a very tense forum
at Lexington School for the Deaf. When Steve and I pitched the story of the controversy
to Sixty Minutes we brought a short list of people they must interview. Noel Cohen, the
League and our beautiful Caitlin, helped tell the world and more importantly, helped tell
other families who were swirling the turbulent surrounding of deafness and the misinformation
about the surgery and about the new technology. It was the shot heard round the world. A few
years ago, Rachel Chaikof, another one of Dr. Cohen's kids, produced a film where few
of the five hundred plus children Noel implanted expressed their gratitude to them. Nothing
beats the children speaking for themselves, and I'd like to share Caitlin's words with
you. I love the sound of music. I love the sound
of laughter, especially when it comes after someone has just cried. I like the sound of
waves crashing on the beach. I like the wind moving through the trees. The sound of Velcro
unfastening. The snapping of fingers, the slapping of flip-flops. The scratching of
a pen on paper and the click clacking of computer keys. The sigh of contentment after doing
something hard. The winding of a camera shutter. The way the air sounds before it starts to
rain. The ignition of a car turning over. The sound of pages turning when you're reading
a really good book. The reaction of the audience in movie theaters. I like singing If I loved
You with my mom. I love hearing the words I love you. And the music of my own voice
speaking my own thoughts. Thank you, Dr. Cohen for giving me all these sounds and the desire
to hear me. Caitlin wanted to be here today but she's in the midst of her second year
of law school and her midterm on constitutional law.
She's also been elected to the student government and is in the midst of leading the fight to
make her school ADA compliant and accessible to her and the other students with disabilities.
All of life's sounds have led to the power of words. Abstract thought. And Caitlin's
own good work. Dr. Cohen changed so many lives. With his hard work. His good work. And his
extraordinary leadership and courage. In turn, the children he implanted are changing lives
and fulfilling their dreams. The span of those dreams, of each cochlear implant child and
their worth, is enormous. Thank you, Dr. Cohen, for all the possibilities.
[applause]
[applause]
>> DR. NOEL L. COHEN: Well I can't really tell you how I feel after those words. I have
a confession to make. When I decided after finishing medical school that I was going
to specialize in otolaryngology in ear nose and throat, a dear friend of my father's who
was an ENT man who I had known since I was a very small kid said to my father and to
me, “You're making a mistake.” He said, “ENT was killed by the invention of penicillin
because I used to be busy if I could do it seven days a week, day and night, taking care
of kids who developed ear infections and required mastoid surgery for those infections because
there was no treatment other than surgery.” Well penicillin came along and it ruined all
of that. Second vignette, when I was in training in otolaryngology and when I was -- when I
became a teacher at NYU at Bellevue, I had a sort of stock expression that we can do
so much about so much, so many things. We can treat cancers of the throat and the ear
and mouth and tongue. We can treat infections with penicillin and all the other antibiotics
which followed penicillin. We can treat some forms of deafness because if the deafness
is caused by an obstruction of that chain of three tiny bones we can remodel those bones
and cause someone who has a very severe loss of hearing to hear perfectly. The only thing
about the ear that we can't treat is deafness that's caused by something in the inner ear
or in the nerve. And that's much more common than a so-called conductive deafness caused
by something wrong with the eardrum or with the bones of hearing. And I continue to say
that, we can't do anything about what we call sensory neural like the inner ear or nerve
deafness. And then I heard about the efforts of experimenters
all around the world, literally in Europe, Australia, in the United States, in California
in -- in Utah -- who were working on the electrical stimulation of the inner ear. Not making the
inner ear better, but transferring from mechanical movement to an electrical current that could
stimulate the auditory nerve and then onto the brain. This is not just thirty years old.
This began, actually, in 1956 in France. An otolaryngologist ear surgeon was treating
someone with a chronic infection of the ear bone inside the ear. He had a friend who was
an electrical engineer and the surgeon realized that this patient, who had this very bad infection,
had his auditory nerve and his cochlear in the nerve were exposed at the bottom of the
cavity that this infection has caused. And he asked his electrical engineer friend to
come into the operating room to see what would happen if they directly stimulated the auditory
nerve with a tiny electrode while the patient was still awake and they did that. They jolted
that inner ear nerve -- the cochlear nerve - with a jolt of pure electricity from a battery
and the patient said, “What's that?” And he described a sizzling lightening like sound
in his ear and that was the first recorded case of a purposeful electrical stimulation
of the auditory nerve that gave rise to a sensation of hearing. And that was -- that
was really the beginning of what ended up being cochlear implants. Cut forward to the
late 1970's, in California, Bill House -- a brilliant surgeon, wonderful guy - had an
idea of organizing that sort of thing, and he developed the first true cochlear implant
in which a cymbal electrode -- a tiny thing an 80 of an inch in diameter - was placed
into the inner ear. And a relatively simple series of stimuli were placed through that
electrode. And that was the going in 1978 of the single-channel cochlear implant.
Bill, who I new professionally, asked me to become a co-investigator. I thought of it
seriously. And I arranged to be able to speak with at least one recipient of a single-channel
cochlear implant, and I was both amazed because it worked and very, very disappointed because
how it worked. Seemed to me so primitive. This was a young woman who had a cochlear
implant and was delighted with it. She couldn't understand a word that I was saying. She could
hear noises. I said, well, what kind of noises. She said when a bicycle falls over I am aware
of it. If a car honks a horn near me. She had gotten an awareness of environmental signals
but it didn't help her speak at all. It didn't even help her to lip read which she did rather
poorly. I decided on the basis of that that this wasn't good enough. It wasn't good enough
to expose to someone to surgery, every surgery ever thought of can cause complications and
even potentially deaths, so I decided to keep an eye on cochlear implants. But not to do
it. Until the late 1960's. It was the meeting of the New York Academy of Medicine in which
experimenters around the world spoke about their experiences with cochlear implants and
the excitement was a multichannel cochlear implant from multiple countries in Europe
to Australia to multiple investigators in the United States. They were going to give
us information about experimental devices and processes that you could achieve understanding
of speech when somebody had their eyes closed with a series of highly complex stimuli through
multiple electrodes placed along one end of the cochlear to the other end. And that gave
me the exposure -- that was the signal. I became associated with a group in Australia
and presented to the FDA data having to do with my job -- was to deal with safety. Did
cochlear implants work? And what were the risks and was the risk benefit ratio really
enough? Good enough to allow us good conscience to use these devices on first adults. And
the answer was clearly, yes. We got permission to do a clinical trial of adults and the results
were, I think, spectacular. They far exceeded our hopes for adults. In the beginning, adults
who had had hearing and some degree of speech and then those results came out and so we
went back to the FDA and did the same for children but this was very different because
they asked us, “How do you know that a child who is deaf, who has never heard, could possibly
hear just with electro-stimulation?” And the honest answer was we don't know. We can
only go on our experience with adults. And what the FDA did was, I think, very wise,
although somewhat disappointing for us. They said you're allowed to implant children who
were born with hearing loss and subsequently lost their hearing. If they get the hearing
back, then we might listen to you again and give you permission to do a trial with children
who have been born deaf. And that's exactly what happened with Caitlin. She was one of
the youngest children. My youngest child I had implanted was five months old and the
oldest was 87 years old. And – magically - the device works. That the fact that someone
can be born without hearing -- not everybody -- they have to have a nerve to stimulate.
But it has been just a wonderful experience for me, and I'm delighted to be here, to tell
you a little bit about it. And also to tell you how very much I have enjoyed being associated,
at one level or another, with what I still think of as the League for the Hard of Hearing.
I can't break myself of that habit. It's been a great pleasure for me. I look forward to
remaining on the Board as long as I can, and I would like to thank Laurie very much and
-- excuse me -- and Jeff. Thank you for the opportunity of speaking with you.
[applause]