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July 27, 2003

Sudden silence: After hearing loss, man turns to implant to hear again

From: Framingham Metro West Daily News, MA - Jul 27, 2003

By Jennifer Lord / News Staff Writer Sunday, July 27, 2003

First of a three-part series.

Bill Holt's world went silent in December. He didn't get any notice that his life would be changing forever. He had what he thought was a headache, some swollen glands. Nothing you wouldn't expect from the winter cold season, nothing he couldn't work through.

The pressure became more intense, enough for him to admit there was a problem. By the time he asked his wife call the doctor, it was already too late.

Holt had a double ear infection. It blew his left eardrum with enough force to drive his hearing aid out in a flood of infected pus and fluid. It gave him unbearable vertigo and put him out of work for a month.

On Christmas, he could only watch as happy family members opened presents and his grandchildren exclaimed in joy. It was like watching a silent movie of his own family, a bittersweet picture of his life to come.

Holt, 48, started the new year convinced that he would be deaf for the rest of his life. The Framingham resident didn't realize that hope, in the form of a quarter-sized device called a cochlear implant, was just around the corner.

A cochlear implant seems like it's right out of science fiction, a bionic device that delivers sound and speech to the human brain. Unlike a hearing aid, the implant does much more than simply amplify sound. It converts speech and sound into an electrical signal and digitally processes and sends it directly to inner ear nerve cells.

"For the patients who have had hearing and then lost it, this is incredible," said Dr. Daniel Lee, medical director of the Sounds of Life Center at the University of Massachusetts Medical Center in Worcester. "For patients who have never had hearing at all, for babies who were born deaf, this is a chance for a new life."

Segregated by silence

"Play train, grandpa, play train," urged Bailey Horne, 3. She tapped Bill Holt, her grandfather, on the shoulder gently to get his attention. "Will you just hear me and go play trains?"

It's the hardest part of Holt's new life -- people talking and only managing to catch a few words by lip reading. His grandchildren caught on fairly quickly, tapping to get his attention. But the only person he can consistently read is his wife, Mary Jane.

"One of the things I'm looking forward to -- my other grandchildren. I'm looking forward to hearing them talk," Holt said, noting that granddaughter Jordan Harding, 2, started talking in sentences after he lost his hearing. "They tell me she hardly shuts up now. But I haven't heard a word."

While he's never been an exceptionally social person, Holt said he has been feeling himself withdraw even more. Date nights with his wife at the movies are a thing of the past. Running into friends can be a culture shock.

He recalled running into two people he knew through soccer in the grocery store. One was very abrupt and obviously felt awkward attempting conversation. The other tried to work with the situation.

"People don't know how to deal with it," Holt said. "Most people, they assume when a person is deaf, they assume that person doesn't speak. I can speak just fine -- the lip reading's just hard to pick up. If I get 50 percent of the words and I don't get the noun or the verb in the sentence, I can't make sense of it.

"The greatest difference to me -- when you're talking with someone, you're trained to look at the eyes, but I have to look at your lips. It makes it very challenging."

There are ways to work around it. Holt seldom goes anywhere without a pad and pen and he keeps an easel in his office at Web Converting in Holliston.

When he first realized the extent of his hearing loss, the thought of losing his job frightened him. His boss, Josh Chernin, quickly put those fears aside, offering to carpool to work while his driving was restricted and working out ways for him to do his job with minimal hearing skills.

"Just real practical, he's a very talented guy," Chernin said. "I don't think we lost a whole lot because he's lost his hearing. He may have lost a lot, but we haven't. He's been with the company for 30 years and has an encyclopedic knowledge of what he does. We'd lose more by giving that up."

There are changes, of course. Instead of asking a question directly, Chernin will send out an e-mail, even if Holt is only 50 feet away. Meetings in which he must participate are more structured -- and a lot shorter.

Perhaps it's because a lot of his social interaction has now been confined to work that Holt notices a few other changes.

"Most of the people at work, I've noticed -- there are some people at work that don't have the patience to work with me. It's frustrating," he said. "People will shy away from me, personally, even if I'm the best qualified person to ask it, they'll ask someone else."

Chernin admits that Holt is sometimes left out, unintentionally.

"I don't think people's attitudes toward him have changed -- it's that sometimes we forget to keep him in the loop," he said. "All the water cooler conversation, the 'did you hear?' conversations, the gossip -- we might not realize he hasn't heard about it."

A bionic breakthrough

Lee, Bill Holt's surgeon, likes to talk about Rush Limbaugh.

It's not Limbaugh's far-right politics that interests him. It's the cochlear implants that restored the hearing of the acerbic talk show host after a total loss from an auto-immune inner-ear disease in 2001.

"Here's a person whose entire livelihood depended on his ability to hear and respond to callers. He was unable to perform his job without hearing," Lee said. "And now he has 80 percent of his hearing back. You can't argue with that kind of success."

Having performed the two-hour surgery more than 150 times over the last five years, Lee can rattle off stories about far less-famous patients. He has high hopes for Holt, although he decided to do the implant on Holt's right ear, which has been without hearing for almost 40 years. The left ear is still wracked with infection and is a less-than-ideal candidate for surgery.

"It's amazing, the brain's plasticity," Lee said. "The human brain can translate this electrical signal as sound and speech. Bill's brain will adjust, even though he hasn't had sound from that side in years."

Lee's patients have ranged in age from 10 months to 80 years old. The youngest patients are a direct result of mandatory infant hearing tests that started back in 2000.

Hearing loss is the most common congenital defect in babies, according to the American Academy of Pediatrics, with 1 to 3 per 1,000 newborns in the "well-baby" nursery and 2 to 4 per 100 infants in the intensive care unit population have "significant" hearing losses. Without newborn screening, the average age that hearing loss will be detected is 14 months.

Candidates for a cochlear implant, first developed in the late 1970s by an Australian doctor, must have hearing loss so severe it cannot be helped by conventional hearing aids. But even infants with profound deafness can be fitted with hearing aids to help their brain develop, an area studied by Lee during his residency at Johns Hopkins University.

"There is a narrow window, a period of development in the brain in which sound is of particular importance for normal brain development," Lee said.

In Europe, doctors are now performing bilateral implants -- cochlear devices in each ear. In the United States, doctors rarely vary from one implant per patient. The surgery destroys whatever hearing the ear has, the cost is prohibitive -- $25,000 just for the device -- and only partially covered by insurance.

"Sometimes we break even, sometimes we lose money," Lee said, referring to the hospital. "The positive net gain for the individual and for society as a whole far outweighs the cost. In the case of a child, in term of dollar amounts, the cost exceeds $1 million if he remains deaf...That's special education costs, the level of education they may not achieve because of their hearing problems."

That's a stance that fuels some of the deaf community's objection to the procedure. Cochlear implants, while useful, are not a "cure" for deafness, according to the National Association for the Deaf (NAD).

"Many deaf and hard of hearing people straddle the 'deaf and hearing worlds' and function successfully in both," the NAD's official statement reads in part. "There are many deaf and hard of hearing individuals, with and without implants, who are high-achieving professionals, talented in every imaginable career field. They, too, are successfully effective parents, raising well-adjusted deaf, hard of hearing and hearing children. As citizens, they continue to make contributions to improve the quality of life for society at large."

Schools such as Framingham's Learning Center for Deaf Children have also integrated children with cochlear implants into their general populations, allowing them to learn and use two languages -- spoken English and American Sign Language.

Hearing hopes

Holt's hearing problems started in childhood, when a series of infections left him deaf in his right ear.

"I never really noticed it much except when we had the hearing tests at school," Holt said. "I was putting my hand up when everyone else was because I was too ashamed to admit it. I stopped that sometime around junior high school."

Eventually hearing problems surfaced in his left ear as well, which were corrected by a hearing aid. In the early 1980s he had surgery on his deaf side to fuse the ossicles -- the tiny hearing bones -- together, an experiment which failed to restore hearing.

He had a normal life hearing with just one ear, he said. The only abnormality happened back when he was shooting baskets at the age of 13, when he spotted Mary Jane on the swings.

"I saw this long-haired, long-legged girl -- blue jeans, that orange 'black power' shirt... definitely love at first sight," Holt recalled.

Mary Jane, overhearing the comment, made a face.

"He made me chase him," she said.

"You chased me?" Bill asked with a smile.

"Oh yeah, I chased you," she bantered. It was obviously an old and much-loved argument. "Up until we got married, I would say, 'I'm going to marry you' and he'd say, 'Nope!'

"We've been married now for 29 years, and everyone was against it," Mary Jane said. "Doom and gloom, it won't last a year. Well ppppbbbbbbttttt to all of them," she said, sticking out her tongue.

They now have three children, Jennifer Harding, Melissa Horne and Joshua Holt, and three grandchildren. Back when Bill first lost his hearing, Mary Jane floated the idea of learning sign language, but he wasn't interested.

Instead, they've found new entertainment in watching for mistakes in the closed-captioning on television.

"It's like they're drunk!" Mary Jane said. "They're so far off it's just amazing sometimes."

Still, Bill Holt misses music. Even if his implant does work, it's doubtful that he'll be able to hear it quite the same way again. And his continuing ear infections have given him vertigo, making it impossible to play soccer.

He tries not to dwell on the negative. He knows his road back to hearing may have some bumps but, to him, it will all be worth it.

"People need to know there's another option," Holt said. "And maybe there's hope. I don't know what that looks like because I haven't gone through the process yet. But I have hope."

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