A family breaks the sounds of silence

From: Rochester Democrat and Chronicle - Rochester,NY,USA - May 30, 2004

Cochlear implants bring a new world to the four Matchetts, of Brighton, who all had controversial surgery together in March

By Greg Livadas
Staff writer

(May 30, 2004) — When Doug Matchett used to start his Harley-Davidson motorcycle, he'd simply enjoy feeling the loud rumble of its engine. With his hearing aids, he'd hear the deepest roars.

But since Doug, born deaf nearly 47 years ago, had cochlear implant surgery two months ago, he now considers the cycle's loud noise a sweet rhythmic purr.

"Oh, it sounds good. Potato, potato, potato, potato, potato…" Doug said, mimicking what he hears. "I hear a lot of things going on in the engine now."

He hears all sorts of things he never anticipated: the ticking of his alarm clock, typing on a keyboard, his dog's nails on the pool deck, a deep cackling from a bird. Hand claps now have resonance.

Doug and his family — his wife, Mary Karol, 40, and children, Scott, 12, and Kara, who turns 10 on Tuesday — each underwent the controversial surgery in March at Strong Memorial Hospital, making them possibly the only deaf family whose members have had simultaneous cochlear implant surgery.

The prognosis for the Brighton family varies. Doug and Mary Karol, deaf all their lives, have had more practice reading lips. But it will be harder for them to adjust to a noise-filled world. Kara and Doug's deafness, while profound, isn't as severe as Scott and Mary Karol's. The more they could hear prior to surgery, the better the expectation.

Since their surgeries, Mary Karol can hear a ticking clock 50 feet away. Scott, wide-eyed, is still exploring what noises are and laughed loudly during a thunderstorm that rattled the windows of his home. Kara now hears the squeak of a swing set and realizes how loud the lunchroom is at French Road Elementary School.

Only time and practice — learning to hear and differentiate what and where noises come from — will tell how well they do. For the next six months, the Matchetts will continue experimenting with their implants and learning new things about the world in which they live. Each will also take more speech therapy and auditory training at the National Technical Institute for the Deaf and Nazareth College.

Both Doug and Mary Karol have been approached by deaf friends asking about their experiences. What can they hear? Could they also be candidates for an implant?

Mary Karol said she would recommend a cochlear implant for those who became deaf later in life or were used to hearing aids growing up. Otherwise, "it would be difficult to adjust."

Some they've met have been critical of their choice, believing they forced their children to have the implants, and blaming them for insurance cost increases.

The Matchetts understand the controversy about their decision. Some in the deaf community believe implants dilute their culture and prevent deaf people from embracing their deafness.

Doug said his implant doesn't make him less deaf. "It's like we have a much more powerful hearing aid," he said.

Breaking the silence

Five weeks after her cochlear implant surgery, Mary Karol visited her audiologist's office to be "turned on." The horseshoe-shaped incision above and behind her left ear, where the implant — about the size of two quarters side by side — was placed, was still red and slightly swollen.

But it had healed well enough for the implant to be activated.

"I'm excited," Mary Karol said in the waiting room of Strong Health Audiology and Speech Pathology in Brighton. It'll be one of about eight trips to the audiologist this year to fine-tune her equipment, enabling her to hear better.

"It'll be noisy. I should get a shirt that says, 'Shhh,'" she said.

Audiologists Mark Orlando and Cindy Hogan escorted Mary Karol and Doug into a small conference room. Orlando placed a large box on the table filled with batteries, cords, extensions, battery chargers and carrying cases the Matchetts will take home with them. They were surprised to learn the large box was a set of supplies for just one patient. They'll end up with three more.

Doug brought a video camera and started documenting the day.

Hogan spent more than an hour having Mary Karol identify noise as Hogan "mapped" the 19 implanted electrodes, using a computer to program the loudness of tones Mary Karol could identify.

Then it was time to activate the device.

Turning up the volume

"When you hear something or feel it, tell us," Orlando said. "You want to hear the lowest level you can perceive hearing or feeling."

Lights wildly lit up on the computer, indicating the electrodes were firing.

"I feel it," Mary Karol said, her eyes looking up toward the ceiling. "It feels like a strobe light."

"Is it comfortable?" Hogan asked.

"It's new," she answered. She thinks she hears static. That noise will be interpreted as sound, and possibly words in time to come, as the electrodes are better programmed and she can identify how sensitive or loud the processor should be.

"Can you hear me talking to you?" Hogan asked.

"It's all … " Mary Karol said, shaking her hands. "It's too loud. It's like I went through the garbage disposal."

She looked over to her husband and mouthed: "This will scare the kids."

Orlando said a natural reaction to a cochlear implant activated for the first time is that even the lowest tones are loud enough.

"After a couple of weeks, you'll want it louder," Orlando told Mary Karol. She could only hear his voice when he spoke loudly, over the seemingly faint whir of the air conditioning fan overhead.

"We live in a noisy environment," Orlando said. "When you start to get used to the noisy environment, then speech can be softer and softer. You have to learn to hear." Orlando said starting with low volume is fine until the patient adjusts. "Now it's going to be your job to practice. And that's a lot of work."

Mary Karol kept experimenting with the processor she wore on her hip, turning the channels to different programs. "I can hear my voice," she said.

And she said it was already easier to lip-read. She hoped to soon be able to detect different pitches, between a man and a woman's voice.

Doug, who would have his device turned on a week later, was curious.

"Does it sound different than the hearing aid?" he asked his wife.

"Oh yeah. Completely different," she said.

After nearly three hours, Orlando sent the Matchetts on their way home with their box. The hand-held processor cost $7,000; the behind-the-ear unit is another $7,000, he warned them. Insurance paid for it all.

'Too loud'

A week later, it was time for the rest of the family to have their implants activated. First was Kara, who was told by Orlando to raise her hand as soon as she heard something.

Kara stared blankly for about 20 seconds as Hogan clicked a computer mouse to increase the loudness of the tones. Her face suddenly turned red. "It's too loud," she said, pointing to the highest level on a noise chart in front of her.

"Hello. Can you hear me?" her mother asked.

"Hi, Kara. Can you hear me OK?" Doug asked her.

Kara squinted and Orlando lowered the loudness. "Sound better?" he asked.

"Better," Kara said.

One hour in the chair and she was done, with four levels of programs to try out. She tucked the portable processor into a front pocket in her overalls.

"She was quick," her mother said. "She wants to go to school and say, 'Look at my new toy.'"

Doug was next.

"Ready?" Hogan asked him as she began clicking the mouse on the computer program that would send tones to the implant in his head.

Doug responded with a thumbs-up. Hogan continued clicking and looked at Doug for a reaction of any kind. Eventually, Doug nodded.

"It's soft, very soft. I felt that one. I felt that. Ewww," he said, grimacing. "It hurts."

"Is it too big?" Hogan asked.

"I don't know," Doug said. "It hurts. Inside the ear drum."

Orlando said there are a lot of nerves near the inner ear. "It fools the system to think it's pain or discomfort," he said. "It's not really a pain. It probably is a discomfort because you're not used to it."

"They weren't used for 47 years. It's so new," Mary Karol said of Doug's nerves in his ear. "It's like seeing the sun for the first time."

Hogan continued adjusting the tones to a more comfortable level.

"That's nice. Nice. Wow," Doug said. He said the noise sounded to him like "someone playing the piano really fast at the very high end."

Suddenly, he broke out in laughter. "You talk funny," he said of Hogan. "You sound like a duck. Like Michael Jackson talking, very high pitch." Orlando spoke, but Doug couldn't immediately hear his lower-pitched voice.

"Give it a couple of seconds," Orlando said. Doug was able to differentiate between a loud and a soft tapping of the pen on the desk. That program was saved to the processor and it was turned off.

"Now it's off," Doug said, sweat dripping off his forehead. "Quiet."

With his implant back on, Doug said he could hear almost every word Orlando was saying.

When he closed his eyes, he couldn't understand what was being said, but with the aid of lip-reading, he understood each word.

"Hi honey. Can you hear me?" Mary Karol asked her husband.

"Yeah. High pitch. Very high," Doug said.

A family hears

Lastly, it was Scott's turn. Shy and reserved, he had the benefit of going last to see how the others in his family made out.

While getting ready for the computer tones to begin, Mary Karol zipped up a carrying case.

"I heard that," Doug said.

After several seconds, Scott, who often used sign language rather than his voice, said he felt something.

The noise got louder. Scott smiled. Doug's video recorder beeped twice as he turned it on, making sounds he had never heard before.

"That's beeping. Interesting," Doug said.

Scott's processor was turned on. Instantly, his face turned red, like his sister's. "It's too loud."

Orlando told Scott to make some noise. Scott banged a battery on the table. Orlando clapped loudly. Scott motioned with his fingers that he heard it just a little bit.

Orlando told Doug they'll need to force Scott to try a louder program.

"You and Mary Karol will need to start using your voice more," Hogan told Doug. "It will help you with your own voice and help them hear."

The Matchetts are expected to hear more and more with each "tune up" session with the audiologist.

The children will take longer to see results but will keep improving; the parents will make rapid improvement until they plateau in about six months, Orlando said.

Learning to hear

When Mary Karol got home after having her implant activated, she heard sounds for the first time: the refrigerator humming, the clothes dryer clanging.

"The first day was overwhelming," she said.

Scott, whose magnetic coil can be easily seen because his hair is cut short, said his classmates have said his new implant "was cool."

Back at school after her implant was activated, Kara was given the option of eating with others in the cafeteria or alone in a quieter room. She chose the cafeteria. A musician in her school orchestra, Kara could hear the tones from her violin before her implant, but since her surgery, it sounded different, she said.

Mary Karol has a better sense of how close a noise is to her. She's heard people walking in a hallway around the corner from her office at NTID, where she's an academic counselor. She heard phones ringing and keyboards clicking.

She said others' speech is clearer to her. "I'm hearing now around me. Do I understand the words? Not yet. But every day, it's better and better."

Doug, a subcontractor for New York Relay, also is enjoying each day, learning what he can hear. But suddenly hearing things all the time can be tiring. Doug said he likes to take his exterior processor off — rendering him totally deaf — an hour before he goes to bed.

"I usually turn it off for a rest," he said. "It's nice and quiet. I can't believe how noisy we are."

A week after being turned on, Kara said she wished she had had the implant sooner.

But like her parents, Kara also feels overwhelmed at times. While watching a captioned movie on television at home, she took off the processor. "I like it," she said of her implant. "But I want peace and quiet."

"Once in a while, it's just nice to shut down and hear nothing," Doug said.

GLIVADAS@DemocratandChronicle.com

Copyright 2004 Rochester Democrat and Chronicle.