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CHOMEDEY, Quebec
-- Ryan Duchoeny completed a French
homework sheet, somersaulted across his living room, colored a picture, then
darted to the kitchen to nibble on a chocolate doughnut -- while his father
described the deaf boy's upcoming ear surgery in Vermont.
Finally, the energetic 9-year-old, who makes his home in Chomedey, Quebec,
had to interrupt. After all, this was his story. With hands flying in
American Sign Language, punctuated with a few words and sounds, Ryan barraged
his father with questions.
How many days before he would have the operation? What's the name of the
hospital in Burlington where he was going? Would reporters snap pictures of
him with a bandaged ear?
Ryan has become a celebrity in Montreal, caught up in a controversy over how
the Quebec government decides who receives specialized medical treatment and
who doesn't.
Because Ryan is fluent in sign language, the government ruled he wasn't
eligible for a cochlear implant -- a procedure that might let him hear.
"Ryan has met other kids with cochlear implants," explained Frank Duchoeny,
Ryan's father. "He sees it works. He is interested in it."
Friends and strangers have come to the rescue, donating money so Ryan could
go to the United States for the surgery.
The controversy over cochlear implants extends beyond Ryan and the Quebec
government's decision. Some deaf people oppose cochlear implants because they
believe this medical option encourages the deaf to turn their backs on sign
language and the unique culture it spawned.
Still, for Ryan, the most important event in this story -- his story -- takes
place today in an operating room at Fletcher Allen Health Care.
This afternoon, Dr. Robert Sofferman will thread electrodes into the curled
cochlea of Ryan's right ear and implant a receptor in the bone on the side of
his head. In a month, after the surgeon's cuts have healed, an audiologist
will activate the device. That's when noise will become part of Ryan's world.
The dream
Frank
and Noreen Duchoeny learned that their only child was deaf when he was 18
months old. The diagnosis was mild to moderate hearing loss.
"Before that, we thought there was a problem," recalled Frank
Duchoeny. "You can always say in hindsight that things weren't
right."
Ryan was fitted with hearing aids and enrolled in the Montreal Oral School
for the Deaf. By age 3, however, Ryan's hearing had deteriorated
significantly. Duchoeny said his son was frustrated in the oral program. The
boy transferred to a sign language program for infants and children through
grade six. There, his father said, "he has thrived."
Cochlear implants have been around for more than 20 years and Duchoeny, vice
president of a computer technology company, investigated them when Ryan was
5. "I wasn't thrilled with the technology at the time."
Instead,
the family learned American Sign Language together and attended conferences
that focused on issues important to deaf people and their families.
At these conferences, Ryan met deaf children with cochlear implants who
signed and spoke. When he was 8, Ryan asked his parents if he could have an
implant.
"It is not us who were pushing the issue," Duchoeny said. "He
is asking."
The rift
Many
deaf people say there is a gulf between the hearing and non-hearing
communities, and hearing people rarely try to bridge it. The hearing world
sees deaf people as disabled, while many deaf people don't consider their
hearing loss a handicap.
Some deaf people even accuse doctors of trying to destroy their language and
culture by promoting invasive surgery to implant electronic hearing devices
in young children before they learn sign language.
Ryan's surgeon said the deaf community "has some very important issues
to raise, but they are wrong about some issues. The procedure is very
safe," Sofferman said, "and the parent is not maiming the
child."
He added, "Sign language is a very beautiful language, but it limits you
in many ways and there are safety issues that are impossible to ignore."
Neither of Ryan's parents is deaf, and they see benefits to hearing -- even
though they believe their son has a bright future with or without a cochlear
implant.
"We live in an oral world," Duchoeny said. "You can't always
count on an interpreter to help you." In the summer, when Ryan attends a
day camp, an interpreter must go with him, his father said. "He couldn't
go on his own."
Ryan's parents agreed to pursue their son's wish, Duchoeny said,
"because we want to open up as many doors for him for the future."
They don't expect miracles. "I expect him to hear more than he currently
hears," his father said. "What happens after that is a
benefit."
Denied
To obtain an implant, Ryan had to
undergo an evaluation at the provincial implant center in Quebec City. That
took place a year ago. In May, the director of the implant program rejected
the boy's application.
"Our experience shows that older kids, specially those using sign
language, obtain very marginal benefits from cochlear implants and often
become non-users," wrote the program director.
"We were discouraged," Duchoeny said. "It doesn't make sense
that he was rejected because he knows sign language."
The family got a second opinion in New York and a third opinion in Toronto.
Those programs judged Ryan to be a suitable candidate for an implant.
Still, the provincial health care agency wouldn't budge, and that's who would
pay for the procedure under Canada's government-run health care system.
Duchoeny launched administrative appeals and enlisted politicians. But he and
his wife also decided that Ryan shouldn't have to wait while they battled
with the government.
"We got in touch with Fletcher Allen," Duchoeny said, "They
said also Ryan will benefit. All you need is $36,000. That translates to
$55,000 Canadian. ... I didn't have 50 grand," he said. "I pay
rent."
Helping hands
The
Duchoeny family found financial help as close as their synagogue. Retirees
Walter and Shirley Roll volunteered to spearhead a fund drive.
"When we became aware that Frank was looking at a cochlear implant and
the Quebec government was not going to give it to the child, my wife said,
'Listen, we're going to raise the money for you.'"
At last count, the couple had collected more than $46,000 Canadian.
Some unexpected publicity also helped the cause. In early January, Duchoeny
read in a newspaper that the Quebec government paid for breast implants for a
14-year-old girl. He called a radio station to complain about the inequity of
the government's decision to pay for breast implants, but not his son's
cochlear implant. His comments hit the airwaves and soon Ryan's story was
headline news.
Donations poured in, and continue to arrive. "Friday morning I went to
the hairdresser," Noreen Duchoeny said. "A woman I didn't know gave
me $5."
The Rolls plan to continue the fund drive until they have enough to pay not
only for Ryan's surgery, but also for his return checkups in Vermont and
training sessions. "We will hustle for it," Walter Roll said,
"and we will get it."
The outcome
Ryan's
implant operation today will be the 98th performed at Fletcher Allen. It is
expected to take two to three hours. Ryan will spend a night in the hospital
before traveling home to recuperate.
In April, Ryan will return to Vermont to have his internal device connected
to an outside sound processor. At first his hearing will be distorted,
Sofferman said. "Some patients have told me it sounds like Donald
Duck."
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