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THIS | PRINT
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ON THIS

Family wants girl's plight
heard

By SARAH SCHILLACI, HERALD NEWS
| 03/01/08 02:11
AM

New law would help pay for hearing aids

CLIFTON -- When 9-year-old Caitlyn D'Alessio
talks about losing 50 percent of her hearing in
the past 18 months, she talks about gym class.

"I have to move up to the front of the room,"
said the School 14 third-grader. Echoes in the
gymnasium make it difficult for her to hear, and
she's often too shy to ask her teacher to speak
up.

When her parents, Pamela and Claudio D'Alessio,
discuss the ordeal, they talk about the months of
doctor visits, the vague diagnoses, and the
uncertainty of how Caitlyn's hearing loss
occurred.

"For me, that's the frustrating part. You
second-guess yourself," said Claudio, a production
manager for a textile company in Manhattan. "She
never, ever complained."

They also talk about money. Caitlyn's hearing
aids, which she will receive in March, will cost
the family $3,500 -- which does not include the
cost of replacing batteries every three to four
days. Pediatric hearing aids are not covered by
insurance, under state law.

The D'Alessio family, which includes Caitlyn's
twin sister, Cristina, and her older sister,
Jessica, is now advocating for Grace's Law, a bill
in the Assembly that would require insurance
coverage for hearing aids for children younger
than 15. The law is named after Grace Gleba, a
Warren County girl who suffers from severe hearing
loss. Her mother, Janine, has lobbied for the law
since 1999.

It's a law that would ease the heavy financial
burden of raising a hearing-impaired child. It
cannot erase, though, the 18 months that Caitlyn
spent suffering from cholesteatoma, an abnormal
skin growth in the inner ear that robbed her of
her hearing.

In June 2006, Caitlyn began complaining about a
pain in her right ear. Thinking it might be
swimmer's ear, Pam and Claudio didn't worry --
until Caitlyn spent a night in her mother's lap,
unable to sleep from the pain. Pam took her to a
local clinic the next day, where doctors diagnosed
her with an ear infection and sent her home with
painkillers.

The searing pain dissipated, but Caitlyn's
infection persisted throughout the summer. In
September 2006, she went to see a local ear, nose
and throat specialist. The problem, he said, was a
polyp in her ear. He sent them home.

"(The doctor) said 'It's going away slowly,'"
said Pam. She and Claudio scheduled a follow-up
appointment for January.

Then came Caitlyn and Cristina's eighth
birthday party, held at a bowling alley. At the
end of the party, Pam had the twins pose for a
picture. She asked Caitlyn to smile.

"I am smiling," Caitlyn said.

Facial paralysis is one of the telltale signs
of advanced cholesteatoma, and the birthday
photographs now point toward the ultimate
diagnosis: Caitlyn only smiled with the left half
of her mouth. The right side was completely
immobilized.

The D'Alessios went to a pediatric specialist
early the next week. After taking an MRI and
examining Caitlyn, he told the family to go
immediately to the hospital.

At Chilton Memorial in Pequannock that evening,
Caitlyn underwent a myringotomy, a surgical
procedure that released fluids in the ear by
making a slit in the eardrum. In early January
2007, she underwent a second operation, this one
at University Hospital in Newark, to remove the
cholesteatoma discovered in the MRI.

"We were told it was a four-hour operation,"
said Pam. "We were waiting for six hours."

When the surgeons finally emerged, they
explained the extent of Caitlyn's cholesteatoma:
the disease had eaten away at the bones in
Caitlyn's right ear, completely destroying two of
them. The third bone was falling apart, but the
doctors glued it back together, hoping it would
fuse itself.

"The growth was so massive, the doctors seemed
to think she was born with it," said Pam.

The family scheduled a follow-up surgery for
November, which they hoped would reveal that the
third bone in Caitlyn's ear had repaired itself.
It hadn't -- and there were two new spots of
cholesteatoma. In addition to removing the growth,
the surgeon took out the third bone, leaving
Caitlyn completely deaf in her right ear.

In the months to come, Caitlyn will face a
fourth surgery, which the family hopes will reveal
Caitlyn's ear to be cholesteatoma-free. In the
meantime, she is preparing herself for her first
hearing aids. Although the family is covered by
insurance through Pam's job as a benefits manager,
they must pay $3,500 for the hearing aids out of
pocket.

"I have a mortgage, I have three kids, they go
to after-care," said Pam. "This is going to have
an impact on our family."

The devices will also completely alter how
Caitlyn hears, making it sound as though every
voice is coming through a microphone.

She's pretty nervous about it, but she's not
the type of girl to complain. She'd rather talk
about ice skating, her passion, or simply hang out
with her sisters.

"Kids are just amazing," Pam said.

Reach Sarah Schillaci at 973-569-7164 or
[email-masked].

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