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Facing a battle from the start

Infant unfazed by medical conditions

Infant unfazed by medical conditions

October 23, 2006|by JULIE E. GREENE

MARTINSBURG, W.Va. - Madison D'Andrea is 8 1/2 months old and has already been through a major surgery to restructure her skull, three long stays in hospitals and numerous tests.

But a stranger wouldn't know it by looking at her.

Other than the fading scar on her fuzzy head, there's no hint of the trauma the Berkeley County, W.Va., tot has been through. Madison doesn't appear fazed by any of it. Sitting in her Sesame Street walker, she's too busy reaching for a cell phone and a decorative pumpkin on the coffee table while smiling at the reporter visiting the house. Mom Wendy pushes the items back, so Madison stretches further to no avail.

"She loves cell phones," says Wendy D'Andrea, 31, who lives near Martinsburg. Madison is fascinated with the buttons.

That she can still see the cell phone is good news.

Madison has a hemangioma, a dense tangle of blood vessels, behind her right eye that could lead to loss of vision.

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She also has torticollis, a shortening of the neck muscles that requires stretching therapy every two weeks.

"She's pretty much got that beat," says her dad, Ray D'Andrea, 33.

And she had craniosynostosis - her skull fused prematurely.

Without surgery to separate the skull and allow the brain room to grow, the possible ramifications could have been seizures, sleep apnea, blindness and loss of hearing, her parents say.

On Aug. 30, Madison underwent 6 1/2 hours of surgery at Johns Hopkins Hospital in Baltimore to unfuse her skull and reconstruct the orbital area around her right eye.

When Madison was born in February, her parents noticed her right eye was bigger than her left eye. A pediatrician thought it might be muscle contraction, they say.

At Madison's fourth-month checkup, the right eye hadn't changed and a different pediatrician suggested the couple take Madison to a specialist, a pediatric ophthalmologist.

A CT scan revealed a mass behind the eye, and an MRI was ordered for the next day at Children's National Medical Center in Washington, D.C.

After the MRI, her parents were told Madison had a hemangioma and craniosynostosis.

The causes for all three conditions - hemangioma, torticollis and craniosynostosis - vary, and it's rare they would occur as a group, says Dr. Susan Gawalt, Madison's pediatrician at Pediatric Associates of Winchester, Va. Gawalt says there's nothing expecting parents can do to prevent such conditions, but there are treatments.

Given everything Madison has had to deal with - including acid reflux resulting in a switch to a more expensive formula and a stomach virus that caused her another hospital stay - the toddler has been a real trooper, her parents say.

"She's pretty tough," says Wendy D'Andrea.

When the top of her head was bandaged to cover the 100 stitches she received in and outside her head, she would reach to pull the bandages off - just because that's what kids do, her mom says.

She'd also pull at her heart monitoring equipment in the hospital, Wendy D'Andrea says.

"She's stronger than all of us," Ray D'Andrea says.

The couple have medical insurance to cover most of the medical expenses.

But they also were dealt a financial blow when Ray D'Andrea had to stop working periodically as a Domino's Pizza tractor-trailer driver so he could accompany his family on hospital visits.

If it hadn't been for about $4,000 in donations, Ray D'Andrea says the family would be about two months behind on its regular bills.

Much of that money was raised from a concert fundraiser his mother, Iris Alvarez, a singer in Fairfax, Va., organized in Fairfax.

While the couple still hasn't received all of the medical bills or paid off their share before the insurance policy's out-of-pocket limit was reached, Ray D'Andrea says he isn't asking for more donations.

"I don't think it's necessary anymore," he says.

He went back to work in late September, and Wendy D'Andrea starts working Tuesday at Kohl's near Valley Mall in Halfway to help pay off the accumulated bills.

If it hadn't been for the compassion of family, friends and strangers helping them out, Ray D'Andrea says he doesn't know how long the couple would have spent trying to catch up financially.

"I didn't think there were so many compassionate people left in this country. We would not have been able to survive without the generosity of people," he says.

D'Andrea says he hopes to help others in the future the way strangers have helped his family.

Madison is due for an MRI in December to check whether her hemangioma has gotten bigger. Doctors haven't operated on it yet because of its proximity to her optic nerve, Wendy D'Andrea says.

So far, the 17-pound infant is on track developmentally, her parents say.

"So far, so good," says Wendy D'Andrea.

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