The Herald News - Story / Family wants girl's plight = heard

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Family wants girl's = plight=20 heard

By SARAH SCHILLACI, = HERALD NEWS=20 | 03/01/08 = 02:11=20 AM

New law would help pay for hearing = aids

CLIFTON -- When 9-year-old Caitlyn = D'Alessio=20 talks about losing 50 percent of her = hearing in=20 the past 18 months, she talks about gym = class.

"I have to move up to the front of the = room,"=20 said the School 14 third-grader. Echoes in = the=20 gymnasium make it difficult for her to = hear, and=20 she's often too shy to ask her teacher to = speak=20 up.

When her parents, Pamela and Claudio = D'Alessio,=20 discuss the ordeal, they talk about the = months of=20 doctor visits, the vague diagnoses, and = the=20 uncertainty of how Caitlyn's hearing loss=20 occurred.

"For me, that's the frustrating part. = You=20 second-guess yourself," said Claudio, a = production=20 manager for a textile company in = Manhattan. "She=20 never, ever complained."

They also talk about money. Caitlyn's = hearing=20 aids, which she will receive in March, = will cost=20 the family $3,500 -- which does not = include the=20 cost of replacing batteries every three to = four=20 days. Pediatric hearing aids are not = covered by=20 insurance, under state law.

The D'Alessio family, which includes = Caitlyn's=20 twin sister, Cristina, and her older = sister,=20 Jessica, is now advocating for Grace's = Law, a bill=20 in the Assembly that would require = insurance=20 coverage for hearing aids for children = younger=20 than 15. The law is named after Grace = Gleba, a=20 Warren County girl who suffers from severe = hearing=20 loss. Her mother, Janine, has lobbied for = the law=20 since 1999.

It's a law that would ease the heavy = financial=20 burden of raising a hearing-impaired = child. It=20 cannot erase, though, the 18 months that = Caitlyn=20 spent suffering from cholesteatoma, an = abnormal=20 skin growth in the inner ear that robbed = her of=20 her hearing.

In June 2006, Caitlyn began complaining = about a=20 pain in her right ear. Thinking it might = be=20 swimmer's ear, Pam and Claudio didn't = worry --=20 until Caitlyn spent a night in her = mother's lap,=20 unable to sleep from the pain. Pam took = her to a=20 local clinic the next day, where doctors = diagnosed=20 her with an ear infection and sent her = home with=20 painkillers.

The searing pain dissipated, but = Caitlyn's=20 infection persisted throughout the summer. = In=20 September 2006, she went to see a local = ear, nose=20 and throat specialist. The problem, he = said, was a=20 polyp in her ear. He sent them home.

"(The doctor) said 'It's going away = slowly,'"=20 said Pam. She and Claudio scheduled a = follow-up=20 appointment for January.

Then came Caitlyn and Cristina's eighth = birthday party, held at a bowling alley. = At the=20 end of the party, Pam had the twins pose = for a=20 picture. She asked Caitlyn to smile.

"I am smiling," Caitlyn said.

Facial paralysis is one of the telltale = signs=20 of advanced cholesteatoma, and the = birthday=20 photographs now point toward the ultimate=20 diagnosis: Caitlyn only smiled with the = left half=20 of her mouth. The right side was = completely=20 immobilized.

The D'Alessios went to a pediatric = specialist=20 early the next week. After taking an MRI = and=20 examining Caitlyn, he told the family to = go=20 immediately to the hospital.

At Chilton Memorial in Pequannock that = evening,=20 Caitlyn underwent a myringotomy, a = surgical=20 procedure that released fluids in the ear = by=20 making a slit in the eardrum. In early = January=20 2007, she underwent a second operation, = this one=20 at University Hospital in Newark, to = remove the=20 cholesteatoma discovered in the MRI.

"We were told it was a four-hour = operation,"=20 said Pam. "We were waiting for six = hours."

When the surgeons finally emerged, they = explained the extent of Caitlyn's = cholesteatoma:=20 the disease had eaten away at the bones in = Caitlyn's right ear, completely destroying = two of=20 them. The third bone was falling apart, = but the=20 doctors glued it back together, hoping it = would=20 fuse itself.

"The growth was so massive, the doctors = seemed=20 to think she was born with it," said = Pam.

The family scheduled a follow-up = surgery for=20 November, which they hoped would reveal = that the=20 third bone in Caitlyn's ear had repaired = itself.=20 It hadn't -- and there were two new spots = of=20 cholesteatoma. In addition to removing the = growth,=20 the surgeon took out the third bone, = leaving=20 Caitlyn completely deaf in her right = ear.

In the months to come, Caitlyn will = face a=20 fourth surgery, which the family hopes = will reveal=20 Caitlyn's ear to be cholesteatoma-free. In = the=20 meantime, she is preparing herself for her = first=20 hearing aids. Although the family is = covered by=20 insurance through Pam's job as a benefits = manager,=20 they must pay $3,500 for the hearing aids = out of=20 pocket.

"I have a mortgage, I have three kids, = they go=20 to after-care," said Pam. "This is going = to have=20 an impact on our family."

The devices will also completely alter = how=20 Caitlyn hears, making it sound as though = every=20 voice is coming through a microphone.

She's pretty nervous about it, but = she's not=20 the type of girl to complain. She'd rather = talk=20 about ice skating, her passion, or simply = hang out=20 with her sisters.

"Kids are just amazing," Pam said.

Reach Sarah Schillaci at 973-569-7164 = or=20 schillaci@northjersey.com.

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