Top News    Monday, March 05, 2001

A Quebec boy's quest to hear


Ryan isn't just another boy having an operation. He's the center of a controversy over how the Quebec government decides who receives specialized medical treatment and who doesn't.

By: Nancy Remsen
Free Press Staff Writer

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."

 

To help

Ryan Duchoeny needs $36,000 to cover the cost of his cochlear implant surgery. He must also return to Vermont for programming sessions at $363 each.


--DONATIONS: Make checks payable to Jewish Community Foundation

Re: Ryan Duchoeny.

--ADDRESS: Mail to

1114 Mill Hill Place,

Laval, Quebec,

H7W 1R1, Canada.

 

Implant film (Burlington, Vermont)

--WHAT: This year's Focus on Films Festival in Montpelier includes two showings of the film, "Sound and Fury," the story of two brothers who make different decisions about cochlear implants for their deaf children. Many in the deaf community oppose cochlear implants, seeing them as a form of child abuse and a rejection of the deaf culture, which is built around sign language. Those in the hearing community see the implants as a gift of sound and life opportunities for profoundly deaf children.
--WHEN:
Noon, March 25; 8:15 p.m., March 28.
--WHERE:
Savoy Theater, 26 Main St., Montpelier.

--DISCUSSION: The audience is invited to stay for a discussion of the film after each showing.