Helping Heather hear

From: Birmingham Post-Herald, AL - 06 Jan 2003

Cochlear implants assist former Miss America in taking on motherhood

By ROBIN CLEMOW
BIRMINGHAM POST-HERALD

ATLANTA - It was more than a year ago when the bathroom flooded.

Heather Whitestone McCallum had turned on the water in the tub and then
retreated to the bedroom next door to take care of a household chore. The
door was open to the bathroom, but she didn't hear the water running.

Jan-Michael Stump/Post-Herald
Hearing repaired: Miss America 1995 Heather Whitestone McCallum was deaf when she won the crown, but now is regaining some ability to hear with the help of a cochlear implant.

And, the former Miss Alabama who became the first deaf Miss America in 1995
didn't hear it spilling onto the floor after the tub filled. She was
distracted by her chores, and when the bath finally crossed her mind, she
turned around to see the water flooding the floor.

That was before.

McCallum's hearing aid, which she had worn since she lost most of her
hearing as a baby, wasn't enough to hear water running. It only allowed her
to hear extremely loud noises such as sirens or a nearby shout.

In August, McCallum received a cochlear implant, a device invented to
partially restore hearing for deaf people.

The cochlear implant grabs sounds from the air, transforms them into coded
signals and sends them as radio waves to an implant behind the ear,
stimulating auditory nerve fibers to allow a deaf person to hear. McCallum,
29, said it has made a big difference in her life.

McCallum married John McCallum in 1996 and moved to Atlanta. Her mother,
Daphne Gray, lives in Hoover. Her father, Bill Whitestone, lives in Dothan.
McCallum stays home with her two children most days, although various
speaking engagements keep her busy about five days a month, she said. Her
husband is the director of the Technology Association of Georgia Foundation.

McCallum explained the difference the cochlear implant, which is a bit
larger than a hearing aid and fits behind her right ear, has made in her
life:

"This year, about four weeks after the cochlear implant was started (after
she turned the device on), I was in my bedroom for one minute," McCallum
said. "My boys climbed over and got into the bathtub by themselves. That was
the first time they ever did that. And they turned the water on. In my
bedroom, I heard it, immediately. I heard the running water, so I went down
the hall, and I caught them."

McCallum leaned back in her chair at a restaurant not far from her Atlanta
home as she said it: "I caught them."

She smiled, her lips a bit pursed, as she thought of her sons'
mischievousness and her accomplishment - hearing. She had potentially saved
her children from drowning, and she gave credit to the implant she didn't
think she would ever want.

Since 1985, when it was approved for use in adults, the cochlear implant has
been a controversial in the deaf community. Some believe it is an insult to
deaf people, who have their own culture and believe they were meant to be
deaf. They believe deafness is a part of their lives, not an ailment to be
cured.

Others have been eager to try the new hearing device, especially those who
lost their hearing as teenagers or adults.

In 1990, the Food and Drug Administration approved cochlear implants for use
in children, and in 1999 the device was upgraded and made available to
infants under 12 months.

About 55,000 people have received implants since the device's inception.

Because McCallum carries a high profile in the deaf community, her decision
to receive an implant has been a public one.

"When I won Miss America, everybody said, 'Are you going to have cochlear
implants?' and I said, 'No, no. I'm fine. I'm happy with my hearing aids,' "
McCallum said. "Until I had baby boys."

McCallum's son, John, will be 3 in January; her other son, James, is 18
months old. Until she received the implant, McCallum said she couldn't hear
John cry or explain sounds to him. She said she wanted to hear for him.

She decided to look into getting the implant when, in November of 2001, her
son fell and began to cry while playing in the back yard. She was watching
John from the kitchen, but she looked away for a moment and when she turned
back around, her husband was consoling their son.

"... I saw my husband - he was in the family room watching a football game -
he got up and walked to the back yard. Then I saw him comfort John," she
said. "I said, 'What's the matter?,' and he said, 'He cried.' This is not
the first time I missed that.

"I was very happy with hearing aids. ... I thought that was fine until I had
my boy, and my boy said, 'Mom, what's this sound?' He asked questions, and I
didn't know the answer. But he taught me that there are more sounds that I
miss. When I'm with an adult, I don't think about it because they don't ask
questions about sounds."

McCallum said it will take her two to five years to learn to understand what
she hears now. She recently discovered the "sss" sound that a scrubbing
sponge makes when she cleans the stove. She understands environmental sounds
such as wind or thunder, and she said she is beginning to understand a few
words she hears.

"Two weeks ago, he (her son) asked me, 'Mom, what's that? And I said,
'Honey, I did hear something, but I have no idea what it was,' " McCallum
said. "That's the problem with cochlear implants. My doctor said it's like
you're in a Russian town. You hear the people's language, but you don't
understand."

The cost of the cochlear implant is about $50,000 to $70,000; the education
and rehabilitation needed to learn to understand what's heard can add to the
cost. She plans to work to get more insurance companies to cover the
implants and to get the government to offer assistance to children and
infants needing the implants.

She said the costs would be less to provide deaf children with implants and
educate them in their pre-school years rather than provide an interpreter
through school and possibly after school.

Not everyone in the deaf community supports McCallum's efforts or even her
decision to receive an implant.

Phillip Easterling, pastor of the Deaf Church at Brook Hills in Birmingham,
said he has heard more complaints than positive feedback from people with
cochlear implants.

Easterling has done a lot of traveling through mission programs, and he said
he remembers meeting a young boy in the Czech Republic who was sitting at
the edge of a swimming hole watching other children play. When Easterling
asked the deaf boy why he wasn't swimming, the boy told him his mother had
forbidden it because he had cochlear implants.

"So, I asked him, 'Do you like having the implant?,' " Easterling said
through a sign language interpreter. "And he said, 'No, I hate them. ...
They are a burden to me.' "

Easterling said he can somewhat relate to the boy's feelings. His mother
forced him to wear hearing aids when he was young, and when he started going
to school for the deaf, he would fake wearing the hearing aids or take them
out all together.

"When you take off a hearing aid and you put it down at night, you can still
feel the reverberation, the ringing," Easterling said. "Some parents force
their children to wear them (hearing aids). You should wait until they get
old enough, and let them make the decision."

As for a parent choosing to send their infant or young child in for surgery
to correct their hearing, he said he considers that cruel.

"For me, as a believer in God's way and the Bible, I believe God made us
deaf," Easterling said. "It's not right for hearing people to use machines
or whatever to make us hear. We weren't meant to hear.

"When hearing parents get married and they have this baby and they find out
that their baby is deaf, oftentimes in America the parents don't allow the
deaf child to be around other deaf children. They (the children) kind of
lose their own identity as a deaf person. ... They don't really know how to
fit in."

He said children who don't wear hearing aids or have implants "are happy,
they are content. They know who they are."

McCallum was raised mostly in the hearing world, and Easterling said that
helps him understand why she decided to have the implants.

Still, he doesn't support implants for anyone.

But Jerry Hamilton, a member of the deaf community in Montevallo, sees it
differently. Hamilton said he loves being a part of the deaf community, but
he is what one might call "pro-choice" when it comes to the cochlear
implant.

"I support (McCallum's) decision," Hamilton said. "Her mother raised her
with an emphasis on making it in the hearing world. There are no other deaf
role models in her family. Her most pressing need at the moment, as I
understand it, is to be able to hear her child cry out. The implant will
help accomplish that."

Hamilton said he has even considered having an implant himself. He had some
hearing until age 13, and he can speak. However, he said he recently changed
careers to become a Web designer and wants to be able to better communicate
with clients.

While the cochlear implant can solve some problems, it doesn't change who
you are as a deaf person, Hamilton said.

"If I had been implanted when I lost what was left of my hearing, I would
probably still be a struggling, frustrated member of the hearing world
instead of being a part of the deaf community with its own culture and
beautiful sign language," Hamilton said. "I am sure I would have never
developed the many close personal bonds and strong friendships that I now
have."

Dr. John Niparko, the surgeon at Johns Hopkins Hospital who performed
McCallum's implant procedure, agreed that the technology can still be
improved.

McCallum, Niparko said, was an ideal candidate for the implant because she
already spoke and could read lips exceptionally well. Plus, she spends 99
percent of her time with hearing people.

Niparko said he performs about 135 cochlear implants per year. Most of the
patients either lost their hearing in adulthood or are very young children
who were born deaf.

Since infants began receiving implants in 1999, there has been no research
that proves that children with implants learn speech faster than a deaf
child receiving the same number of hours of education, Niparko said. This
has been the basis for some argument against implanting infants.

The difference, Niparko said, is that children with implants can speak and
hear.

And McCallum said she believes research will soon prove it makes a
difference in speech acquisition.

"I met a small boy, I think he was 5 years old. He had had cochlear implants
since he was 1 or 2 years old, and he already knows Spanish and English,"
McCallum said. "He spoke very well. People could not believe he was deaf.

"It took me six years to say my last name correctly."

McCallum has had to start over with her education since receiving her
implant. At the restaurant near her home, she had to ask to change tables
because of loud diners nearby.

She cannot yet filter out noises or understand voices.

It's frustrating, she said. And occasionally, when her two boys are
particularly fussy, she turns off her implant for a moment to stay sane.

But she said it is worth it.

"It's not easy to change for the better, because I have to start over," she
said. "I have to take rehab again, I have to take education to teach myself
the new sounds. Who wants to go back and do the baby steps again as an
adult? It's not easy.

"But then I just keep thinking about the many good things cochlear implants
have done for me, like the bathtub.

"Three weeks ago, I heard my sons first two words with the cochlear implant,
and that was 'goodnight moon.' We were listening to the tape of the book in
his bedroom and he was repeating what the person was saying. They said,
'goodnight moon,' and he said, 'goodnight moon.' "

As she repeated her son's words, McCallum smiled and raised the pitch of her
voice to imitate a young child, showing she had not just read his lips, but
heard him.

"He has said other words, but I haven't been able to understand anything.
That was the first time I understood perfectly what he said."

Copyright (c) 2003 Birmingham Post Co. All rights reserved.