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Sounds of Silence
State Journal Register
Springfield, Illinois -- Oct 1, 1999 --

Tjelmeland had never heard her mother's voice.

At 18 months of age, she couldn't say mamma or daddy or speak her own name.

Born profoundly deaf, Ellie had never learned to speak.

 

She wore the most powerful hearing aids available, one in each ear, but she

could barely hear anything, say her parents, Joel and Michelle Tjelmeland

(the name, Norwegian, is pronounced Chum-land). She could form sounds but

wasn't learning to talk. Infants learn speech by listening to it, but Ellie

could not hear the voices of her mother and father.

 

Now, thanks to her parents' determination and the skill of a team of

doctors and speech specialists, Ellie can hear sounds, and there's an

excellent chance she will learn to speak. The key to that transformation is

a tiny device called a cochlear implant.

 

Hearing bad news

 

Exactly why Ellie is deaf isn't known, but her doctors suspect that the

cause is congenital.

 

Her mother, Michelle, 25, also suffers from deafness that began in

childhood. Michelle Tjelmeland wears a hearing aid in both ears, and her

speech has a slurred, slightly buzzing quality, probably the result of poor

hearing when she was learning to speak.

 

A former teacher at Franklin Middle School, Michelle gave up teaching after

Ellie's birth. She and husband Joel, 32, suspected from the beginning that

something was wrong with Ellie's hearing.

 

"I wanted her hearing tested when she was born, but for some reason that

wasn't followed up on," Michelle remembers.

 

Figuring out how well an infant hears is always tricky even for

professionals, but Michelle and Joel kept picking up cues that something

was amiss with Ellie's hearing.

 

"She was so impervious to noise that it began to worry me," recalls

Michelle. "Loud noises didn't seem to bother her at all. Nothing scared

her."

 

Concerned, the Tjelmelands took their daughter, then 2 months old, for a

hearing test. The results should have been reassuring. "They told us there

was nothing wrong," Michelle says. A later test was interpreted as showing

a mild hearing loss.

 

Despite the scientific testing, the sophisticated equipment, the assurances

of doctors, the Tjelmelands weren't convinced. Why wasn't their daughter

responding to their voices?

 

One day, Michelle recalls, she decided to do her own test of her daughter's

hearing.


"I banged a pot and pan together just over her head. She never even woke

up. That didn't correlate with a 'mild hearing loss,'` she says.

 

Not very scientific, perhaps, but very convincing.

 

From then on, Michelle and Joel were on a crusade - find out what was wrong

and what could be done to fix it.

 

Hearing bad news

 

About four months ago, they took Ellie to Louisiana State University for

hearing tests. These confirmed the Tjelmeland's worst suspicions. Ellie was

profoundly deaf.

 

"They said she had essentially no hearing," Michelle recalls.



Specialists at Southern Illinois University School of Medicine fitted her

for the most powerful hearing aids on the market. They took measurements,

made molds of her ears and generally did everything they could to give her

the best technology.

 

But getting an infant to wear hearing aids isn't easy. And as Ellie grew,

they had to be refitted to her ears constantly. "It was very hard to fit

her because she was growing so fast," Michelle says. "Every time she needed

new shoes, she needed a new fitting."

 

Michelle Tjelmeland wanted her daughter to learn to speak normally, and

with Ellie's level of hearing impairment, she feared that wouldn't happen.

 

"Even with the best hearing aids, she would never learn to speak," says

Michelle. She and Joel kept searching for an alternative. Enter Dr. Michael

Novak.

 

A Carle Clinic otolaryngologist - a surgeon who specializes in the ears,

nose and throat - Novak is a short, slender man of about 45. His neat, trim

appearance, small, well-manicured hands and controlled, measured way of

speaking all seem to fit the mold of a surgeon.



Trained at Baylor College of Medicine in Texas, he moved to Urbana and

joined Carle about 18 years ago. A few years later, he began working with a

new, and then revolutionary technology for aiding the deaf, called the

cochlear (coke-lee-er) implant.

 

The cochlea is a snail-shell-shaped organ buried deep in the ear. Inside it

are tiny canals filled with fluid and lined with microscopic structures

called hair cells. These are one of the keys to human hearing, says Novak,

and they are the reason why the cochlear implant helps kids like Ellie to

hear.

 

Vibrations transmitted from the eardrum pass through the bones of the ear

into the cochlea. The vibrations stimulate the hair cells and they in turn

stimulate the auditory nerve, explains Novak. Anything that interferes with

that progression diminishes hearing.

 

"Ellie's hearing loss is probably congenital," Novak speculates. "Nearly

one-half of hearing loss in young children is inherited."

 

Conventional hearing aids work by amplifying sounds. From the old ear

trumpet to the latest digital models, they're basically an attempt to power

sound past the blockage.

 

The cochlear implant, by contrast, works by stimulating the hair cells in

the cochlea directly.

 

The implant itself is a slender thread of wire not much bigger around than

a strand of spaghetti. Along its length are electrodes, which can transmit

signals at different wavelengths, explains Novak.

 

The implant is connected to a central microprocessor - a computer brain -

which picks up incoming sound waves, converts them to digital impulses and

directs them to the implant's electrodes. The electrodes fire, stimulating

the cochlear hair cells, which pass the impulses up the auditory nerve to

the area of the brain that interprets sound.

 

But there's a daunting element to this technology. Ordinary hearing aids

just sit behind the ear. A cochlear implant requires a surgeon to open the

skull, uncover the cochlea and thread the implant into place. Novak has

done the procedure hundreds of times; but the Tjelmelands have only one

child. And she's only 18 months old.

 

Braving the fix

 

It is 6 a.m. Tuesday, Aug. 24. Michelle, Joel and Ellie Tjelmeland arrive

at Carle Hospital in Urbana. They seem to have brought the whole family

with them. Both sets of grandparents are in attendance as are Michelle's

sister, Melissa and one of Melissa's college chums. Movie and still cameras

are in evidence.

 

Michelle and Joel seem cheerful, but beneath the anticipation, both are

tense. This is the first step toward a new life for Ellie, a life in which

she will have both feet firmly in the hearing world. But the step is a big

one. The only one who doesn't appear apprehensive is Ellie herself. Despite

the strange and somewhat menacing atmosphere of the hospital, she's

playful.

 

They take Ellie to a waiting room for same day surgery. Amazingly, if all

goes well, the Tjelmelands will take Ellie home that afternoon.

A nurse takes Ellie's vital signs, then squirts a dose of preoperative

medication into her mouth. The Tjelmelands are keeping their own record of

the day. They have a video camera and a digital still camera, and they take

turns recording what's happening to their daughter. Every time the camera

points her way, Ellie responds with a grin.

 

"With all this taping she's going to think it's Christmas morning," cracks

one of the nurses.

 

"Well, it is," answers Michelle. "It's going to change the rest of her

life."

 

Michelle and Joel get Ellie into a special gown that resembles a pair of

pajamas. Novak's nurse, Shirley Sharp, breezes in to check on Ellie and

gives her a tiny stuffed cougar with "Especially for Ellie, your Clarion

cougar" written on it. Ellie plays with it delightedly.

 

Sharp has a quick reassuring word with both parents, then hustles off to

scrub for the coming operation. Michelle and Joel take Ellie to a playroom

while they wait for the medication to take effect.

 

After a few minutes, Novak makes an appearance. The surgery will take about

an hour, he tells them. And don't worry, he says. "Just assume I'm doing

fine," he tells them. "As soon as I'm done, I'll come out and find you

guys."

 

Michelle muses on what it must be like to know how to do what Novak does.

"How fun it would be to be able to change someone's life like that," she says.

 

Ellie crawls around the playroom, seemingly determined to touch everything

at least once. Michelle and Joel never take their eyes off her. Michelle

can't seem to touch her enough. Ellie looks at her aunt, Melissa, and points toward her mouth, sign language for "I'm hungry." Melissa shakes her head, "No." This close to surgery, Ellie can't have anything to eat or drink.

 

Ellie points to her mouth again and nods her head up and down vigorously.

 

She wants food.

 

Dianne Hammes, a speech therapist who has worked with Ellie for the past

ine months and will be with her in surgery, talks with Michelle and Joel

and via sign language, with Ellie. The Tjelmelands feel close to Hammes,

who has a deaf brother.

 

"She somewhat understands what we were going through as parents trying to

evaluate all the options," says Michelle.

 

At around 8:15, Shirley Sharp pokes her head around the playroom door:

"We're ready," she says. Hammes takes Ellie in her arms and walks toward

the operating room. Ellie is subdued; she's finally figured out that

something is going on.

 

In the operating room, a frightened Ellie begins to cry. But the nurses and

the anesthetist have done this many times. They place a mask over Ellie's

face and tell her to breathe in and out. Within seconds, her cries have

quieted down; she's unconscious. A tube in her windpipe connects her to a

machine that will keep her anesthetized during surgery and provide her with

oxygen.

 

By 8:30, Ellie is positioned for surgery and covered with a special blanket

to keep her body temperature steady. In the background, the songs of Sheryl

Crow's "Globe Sessions" form a melodic counterpoint to the mechanical

beeping and hissing made by the medical machines.

 

Novak shaves Ellie's head; then using a marking pen, he plots a series of

blue points in the skin behind Ellie's right ear - the arc of the incision

he'll make.

 

There's sureness in Novak's movements that bespeak experience. He's done

more than 200 of these operations. Kids as young as Ellie are unusual but

not unheard of, he says. In fact, Novak has operated on a youngster only 9

months old.

"Carle is one of the big national centers for doing cochlear implants," he

says. "We've been doing them for about as long as anyone."

 

Satisfied that he has marked the incision area precisely, Novak goes off to

scrub for surgery. Sharp scrubs with disinfectant the area marked on

Ellie's scalp, leaving a bright orange-brown swath along the right side of

the child's head.

 

Novak returns and pulls a stool up to Ellie's head. At eight minutes before

9 a.m., his foot tapping to the beat of Sheryl Crow, he makes the first

incision. A monitor relays the reassuringly steady rhythm of Ellie's heart

at 134 beats per minute.

 

Novak's operating room technician, Mike Hammer, passes a steady stream of

instruments to the surgeon. Novak and Hammer have done more than 150 of

these operations together. Each is attuned to the other's rhythm.

 

Cutting through skin and subcutaneous tissue, Novak exposes the mastoid

bone. A special cauterizing scalpel uses heat to seal off tiny blood

vessels, minimizing bleeding and filling the surgery with the acrid smell

of burned flesh. The mastoid bone looks honeycombed inside because it's

filled with air sacs, Novak explains.

 

Using a special device that sounds remarkably like a dental drill, Novak

shaves off bits of bone to get to the cochlea. Once it's uncovered, he

drills a hole in it. Taking the implant, he threads it with a special tool

into the inner labyrinth of the organ.

 

The device has 16 electrodes in it, he says. Electrodes will go into

different regions of the cochlea and stimulate hair cells there in a

variety of combinations, creating a range of sound perceptions, he says.

 

Adults who've had implants say speech at first sounds tinny and mechanical,

like a robot speaking, says Novak. How a child Ellie's age will perceive

the brave new world of sounds is anyone's guess.

 

Ellie will need a month of recovery before returning to Carle to get her

implant hooked up to its computer brain, says Novak.

 

Novak shaves a portion of the mastoid bone into the shape of the receiver

end of the implant, which will rest on that spot, just underneath Ellie's

scalp. He also shaves a groove to carry the implant on its course down into

the brain. On the outside of the scalp will sit a headpiece with a

microphone in it. Magnets in both will hold the microphone in place. From

the microphone, a wire will run to a microprocessor that Ellie will wear in

a special harness.

 

The sound processor picks up environmental sounds such as speech and

transmits them to the microphone, which passes them to the receiver below

Ellie's scalp. It sends the signals along to the electrodes, which fire in

sequence and stimulate cochlear hair cells. The result will be sounds that

Ellie eventually will learn to interpret.

 

Novak takes a flap of tissue from the incision on Ellie's scalp and sews it

in place over the hole he made over the cochlea. Then, at 9:40 a.m., Novak

begins sewing the implant in place. At just before 10, he tests the device

to make sure its electrodes respond. Everything checks out.

 

By a little past 10, Ellie is all sewn up and beginning to stir. Even as

Novak closes the incision in Ellie's head, the anesthetist has been

changing the mix of gases that she breathes, easing her return to consciousness.

 

The final touch is a bit of stuff called dermabond, sort of medical Super

Glue. "It helps hold the incision together," says Novak. "As soon as her

hair grows back a little, you'll hardly know we were there."

 

By 10:30, Ellie, her head swathed in gauze, is in the recovery room, with

an oxygen mask clamped on her face. Novak walks to the waiting area where

the Tjelmelands and family have waited nervously for a little more than an

hour. "She's in the recovery room," he tells them. "She's waking up and

doing fine."

 

The relief is almost palpable, and everyone begins talking at once,

jostling to shake Novak's hand. There are tears in more than a few eyes.

 

"The implant is working just like it should," Novak continues. "Everything

went just like it's supposed to. Now, it's just a matter of letting it

heal."

 

Joel and Michelle follow Novak to recovery, where Michelle sits in a chair.

A nurse places the still sedated Ellie in her arms. Michelle cries

silently. Nurses bustle in and out, sometimes taking the child's temperature or blood

pressure. Whenever anyone disturbs her, Ellie lifts her head and begins to

cry. As soon as they leave, she burrows back down into her mother's arms.

 

She's very sleepy.

 

Nurse Amy Matthews takes out Ellie's intravenous line and gives Michelle

and Joel some final instructions. "She may not be hungry," Matthews tells

them, "and she may be a bit crabby. That's to be expected."

 

At 12:40 p.m., Joel Tjelmeland carries his sleeping daughter out to the

family car. He and his wife return to Springfield. Phase one is complete.

 

In a month, they'll be back for phase two - when Ellie hears her first

sounds through the implant.

 

A moment of truth

 

It's 9:30 a.m. on Thursday, Sept. 23. Carried in her father's arms, Ellie

Tjelmeland enters Carle Hearing Services. Once again, the entire family is

on hand.

 

If the operating suite is Novak's natural habitat, these offices with their

soundproofed rooms and testing devices are home base for the audiologists.

 

Hammes works here, and she comes out to greet them and lead the way to the

testing area. Ellie, her mom and dad, Hammes and another audiologist, Lee

Ann Rotz, are crammed into a small room. Rotz works at a laptop computer,

which she'll use to stimulate the electrodes in Ellie's implant. It's a

test, to see if they're working and to observe Ellie's responses.

 

Novak is also on hand. This is a charged moment for him, too, the

culmination of the work begun a month ago.

 

The atmosphere is loaded with high expectations. Ellie's grandparents and

her aunt and a few friends cram into an observation room adjacent to the

test area. Speaking with one of Ellie's grandparents, Novak does his best

to tone down expectations a bit. "Some kids seem to respond right away, and

some don't," he says gently.

 

Ellie has had some sound through her hearing aids, but chances are what she

hears through the implant won't have any meaning, he says. It's going to be

a learning process for all concerned.

 

Rotz plugs one end of a wire into the back of the laptop. The other end

goes into the microprocessor.

 

With everything hooked up, Rotz pushes a key on the laptop to generate a

pulse that causes an electrode in Ellie's implant to fire off. Instantly, Ellie looks up.

 

"Yes, that's good, beep, beep, beep," says Rotz, while signing to Ellie.

The child returns to her playing. Each time Rotz stimulates one of the

electrodes in the implant, Ellie freezes and looks directly at Rotz, who is

watching her intently for signs that she's hearing. For close to an hour,

she generates a series of pulses, stimulating electrodes at different

frequencies and recording the results.

 

For all the technology, it's a subtle process, one that relies heavily on

the observations and skills of Hammes and Rotz. Both watch Ellie carefully

to see if she's hearing anything, all the while not trying not to give away

too many cues as to what reaction they're looking for. Together, they've

hooked up more than 130 children to cochlear implants. They've seen all

kinds of initial reactions to the sounds, says Rotz. Some kids don't

respond at all; sound scares some others, she says.

 

Ellie is doing well.

 

"She's having an excellent response," Rotz tells Michelle and Joel.

 

Once the initial testing is done, Rotz hooks up Ellie's implant to the

microprocessor. No more computer-generated tones. The sounds Ellie hears

from this point on will be the sounds of life going on around her, the

sounds of her parents' voices.

 

Hammes turns the volume on the microprocessor way down. If it's too loud at

first, it might well scare her. It does and Ellie starts to cry. Hammes

quickly distracts her with a game and they lower the volume on the

processor further.

 

They try again. Michelle calls her daughter's name, but Ellie doesn't even

look up.

 

"I don't think we've ever had a kid turn to her name," says Rotz, trying to

reassure her.

 

"I don't think she even knows her name," Michelle replies.

 

Gradually, Ellie adjusts to the sounds of the outside world. Over the

coming weeks, her parents will adjust the volume upward, until she becomes

acclimated to hearing.

 

Michelle and Joel know there is a lot of work to do. Ellie is way behind

her age mates in learning spoken language, although she already knows more

than 30 words in sign language. Ellie will keep coming to Carle in the

coming year to learn to speak.

 

Ellie wears the microprocessor in a special harness that fits over her

shirt. On it is a pouch with a Velcro flap to hold the calculator-sized

computer brain in place. A microphone, connected by wire to the

microprocessor, sits tucked behind Ellie's right ear on a spot directly

over the head of the cochlear implant. Magnets in both hold the microphone

in place.

 

Michelle Tjelmeland faces some decisions about her own hearing, which is

continuing to deteriorate. She has a hard time hearing the telephone. She

says she's thinking seriously about having a cochlear implant herself in

the future.

 

But for now, the focus is on Ellie. Initially, at least, they'll go back to

Carle weekly for so called "mapping sessions" in which a computer programs

the implant to Ellie's specific level of hearing loss.

 

For example, Ellie has no hearing at all in the high-pitched sounds, so the

device is programmed to make up for that in different environments. It

could take a year before the implant is fully adjusted.

 

It's worth the effort, Michelle says. "I want the first voice she hears to

be mine saying, `I love you.'`