Deaf family gets cochlear implants

From: Democrat and Chronicle - Rochester,NY,USA - Mar 23, 2004

Greg Livadas Staff writer

(March 23, 2004) — Doug Matchett wants to hear leaves rustling in the wind. His wife, Mary Karol, would like to follow the words to Christmas carols, particularly "O Little Town of Bethlehem" because she was raised in Bethlehem, Pa.

Their children, Scott, 12, and Kara, 9, also deaf, someday hope to understand the words to pop and rap songs, rather than just the vibrations they feel now when they crank up the music in their Brighton home.

With cochlear implant surgery and a lot of practice, they might just be able to. In what may be a first, all four members of a family — the Matchetts — are undergoing surgery this month to have electrodes inserted in their cochlea, where their auditory nerves begin.

When their cochlear implants are turned on in about six weeks, the devices will allow more sound to be perceived by their brains.

Cochlear implant operations, which have been controversial in the deaf community, have been done on three members of the same family in the past, but not always at the same time.

Doug's reason for wanting a cochlear implant is simple: "I want to hear more than what I hear now."

"The kids have been asking for it," Mary Karol said. "They made their own decisions. We could have given them a cochlear implant when they were little, but we wanted them to make up their own minds."

Mary Karol was the first in her family to have the outpatient surgery, on Thursday, at Strong Memorial Hospital.

"The surgery went smooth," Mary Karol said Friday at home, where she was recuperating. "No pain, just soreness in the area where the device is implanted."

Scott and Kara's surgeries were Monday; their father's is planned later this week at Strong.

Their insurance, Preferred Care, will pay the entire cost for the operations, estimated at $40,000 each. That includes the cost of the implants and processors, which cost about $25,000 a set.

Doug, an insurance broker, said it wasn't by design to have the whole family receive implants around the same time, but it happened more by chance when their surgeries could be scheduled. But Mary Karol is happy they're going through the same experience as a family.

"This way, we can recover together, get it over with," she said.

And having mom go first has its advantages.

"I'm curious what she feels like," Kara said, using sign language before her mother's surgery. "If she doesn't like it, it's no thank you."

Decision: Do it

The road to Strong began more than five years ago, when Doug began to research the possibility of getting a cochlear implant.

"I felt the technology wasn't ready at that time," he said.

He kept following the technological improvements. In October he began meeting with doctors to see whether he and his family were candidates for the surgery.

The Matchetts also met with others who have had the surgery. "Most of them we met really loved it," Doug said. "They said great things about it."

But Mary Karol has heard some horror stories. She works as an academic counselor at Rochester Institute of Technology's National Technical Institute for the Deaf and has talked to many students there who have received implants.

Of the approximately 1,100 deaf and hard-of-hearing students at NTID, more than 110, or 10 percent, have cochlear implants. Some of them were among the first children to have the operation nearly 20 years ago, when the technology wasn't as advanced.

"The students who had it a long time ago, they didn't like it," she said.

NTID has an active cochlear implant support group for students. And at Rochester School for the Deaf, 10 of the school's 145 students use cochlear implants; teachers use voices as well as sign language.

In 1991, the National Association of the Deaf (NAD), one of the oldest, largest and most respected organizations of the deaf in the world, stated that implants for children, especially those too young to decide for themselves, were "deplorable," and would dilute deaf culture as more deaf people try to become hearing. But in 2000, NAD said cochlear implants should be viewed as tools, such as hearing aids or other assistive devices, if used with proper follow-up services. But they are not appropriate for all deaf children or adults, it says.

Mary Karol isn't expecting much when the implant is first activated. It can take up to a year of fine-tuning to enable patients to distinguish frequencies.

"I know it'll be awful," she said. "It'll be a big shock."

Mary Karol knows not everyone who gets a cochlear implant can hear well enough to differentiate words or even hear on the telephone. She'd be happy if she can follow the words to songs she knows.

Kara, who plays the violin (the instrument produces a frequency she can hear now), wants to listen to rapper Eminem.

From his research, Doug hopes to be able to hear environmental sounds like birds and water running in a brook. But he is prepared for something less. Even after their implants are turned on, they all must comprehend what noises they are hearing.

Mixed results

The Cochlear Corporation, based in Colorado, estimates 50,000 people worldwide have had cochlear implants in the past 22 years. About 30,000 of them have been in the United States. That total is divided almost equally among children and adults.

The Matchetts' surgeon, Dr. Paul Dutcher, said the family's prognosis to hear more is good, but an implant is not a substitute for normal hearing.

"We're looking at an aid to lip reading, and an aid to environmental sounds," Dutcher said.

Close to 100 patients — some as young as 12 and 18 months old — have had cochlear implant surgery at Strong. The trend seems to be exploding; 20 additional surgeries are planned at Strong in the next two months, Dutcher said.

But the results will vary from patient to patient. Historically, those who receive cochlear implants before they learn a language or those who lost their hearing later in life do better with a cochlear implant. Those born deaf who receive an implant later in life often struggle to comprehend words; their brain has learned to process language differently.

"Implants give patients enormous gains to functionally hear environmental noise in the world," said Robert Pollard, a Ph.D. and director of the Deaf Wellness Center at the University of Rochester Medical Center. "When understanding human speech, the implant result is far more moderated.

"Speech perception abilities require a lot of practice and a lot of experience."

Elizabeth Laidlaw Santana, whose daughter, Yolanda, had her cochlear implant surgery followed by the Democrat and Chronicle in 2000 when she was 3, said Yolanda has adjusted to her implant well.

Now 6, Yolanda is in a mainstreamed kindergarten at School 5 on North Plymouth Avenue.

"She's reading, she's doing math, she counts up to 20, doing all those things you'd expect. And she's talking a lot," Santana said.

Progress was slow. But since June, Yolanda has done better with an experienced teacher. Yolanda uses a sign-language interpreter for a few hours in her school day. She wears her external processor, and she prefers to use her voice. When she takes the processor off — or is angry — she switches to sign language, her mother said.

A personal choice

The Matchetts, each born deaf, consider themselves a deaf family. Doug and Mary Karol are from hearing families; Doug learned sign language when he was 22; Mary Karol learned when she was 3 ½.

News that they are all receiving implants together has quickly spread within the deaf community. "We have a lot of support from our friends here, hearing and deaf," Mary Karol said.

The critics of cochlear surgery believe deaf people should embrace their deafness and strive to preserve its rich culture and history.

"I don't want to start a war with the deaf community," Doug said. "But it's like we're on No Man's Island. Hearing people think we're too deaf. Deaf people think we're too hearing."

Mary Karol's father, Richard McCarthy of Bethlehem, Pa., visited last week and will return when her incision has healed and the device is activated. She said he is supportive but did question why the adults were having the surgery.

Doug's parents, William "Pete" and Nancy Matchett, drove their motor home five days from Boulder City, Nev., and pulled into the Matchetts' driveway Wednesday afternoon. They will stay in Rochester throughout the surgeries.

On Tuesday, while Doug was driving Scott to swim practice in the snow, a cancellation was announced on the radio, which he couldn't hear. When Doug got to the closed school, he took out a text pager and typed a message to let Mary Karol, who was driving Kara to the same school, know to turn around.

While implants may enable them to hear more, they won't give them new identities.

"We're deaf anyway. With cochlear implants, we'll still be deaf, not a hearing person. That wasn't our purpose," Doug said.

Copyright 2004 Rochester Democrat and Chronicle.