Disfigured teen gets new face, new life
(AP)Updated: 2006-11-27 15:08
Miami - The 3-year-old in the photograph had her mother's nose, big brown eyes and two baby teeth showing in her wide smile.
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But by the time Marlie Casseus was 14, what she saw in the mirror bore no resemblance to the girl in the picture -- or any girl. Whatever was under Marlie's skin looked like a basketball, or two eggplants. All that remained of her nose were two distended nostrils. A single tooth poked through the stretched membrane of her upper lip. She had one good eye.
One night last year she stood at the mirror in her family's home in Port-au-Prince, Haiti, making slashing motions with a knife, as if she wanted to cut the massive deformity out of her face.
Instead, that has been accomplished by a team of Miami doctors who performed four operations to cut away the 16-pound monster, replace bone and release the girl inside.
Dr. Jesus Gomez, the maxillofacial surgeon leading the teams operating on Marlie at Holtz Children's Hospital, says the mass that engulfed her face probably started growing when she was as young as 5.
"She didn't have any mouth. She didn't have any nose," said Gomez.
He said her condition is a rare form of polyostotic fibrous dysplasia, a nonhereditary genetic disease, which affects every bone in her body, though not to the severity with which it disfigured her face.
Marlie's mother, Maleine Antoine, says her daughter never spoke clearly, and her permanent teeth weren't appearing, but she didn't worry until Marlie was 8 and she noticed two small bumps on either side of the girl's nose. Marlie also was beginning to complain that her mouth and throat hurt when she ate.
Haitian doctors could do nothing. With no advanced medical imaging in the impoverished Caribbean country, no one could see that the bumps weren't growing on the bone -- the bumps were the bone ballooning and turning to jelly, riddled with pockets of liquid and air.
What everyone did see was Marlie's nose stretching into a snout, her eyes sliding farther apart and her upper lip pushing out past her chin.
At school, Marlie mostly learned to hide behind walls and trees to avoid the other students who pointed at her face. Passengers on city buses backed away from her.
She retreated home for good when she was 12 and could no longer speak.
In the summer of 2005, Marlie's father saw a news broadcast about Gina Eugene, a Miami woman who runs a Haitian children's charity with her twin sister.
Eugene says the father called her the next day, but only mentioned "something little" growing on his daughter's face.
"Something little" was a 16-pound mass under Marlie's skin. Her upper lip protruded like a second forehead, and the wheezing girl supported her head with her hands.
"I thought it was an animal with a human body, or two heads -- I didn't know what I was looking at," Eugene said.
Her nasal passage blocked, Marlie breathed and ate through what was left of her mouth: a single, straw-thin passage.
To eat, she mashed plantain into a ball, laid her head on the table and stuffed the fruit pulp down her throat with a finger.
"Then her throat, like a snake swallows, you could see the food going down," Eugene said.
Over the past year, Marlie has undergone four operations in Miami, the latest in October to replace a titanium plate previously implanted to replace her jaw.
Her features have been repositioned and hard polymer has been used to replace other facial bones. Doctors say she may need more cosmetic surgeries when she stops growing.
Gomez says the facial mass won't grow back, though her condition requires lifelong monitoring.
Marlie still cocks her head to the right as if the 16 extra pounds still weighed down her head, but she no longer hides.
A white tracheotomy tube in her throat keeps her from making sounds and from eating solid food.
She will soon be able to speak again and her liquid diet will slowly be replaced by pureed, soft foods. Before her last surgery, Gomez told Marlie to practice whistling to strengthen the facial muscles she'll need to eat and speak.
In the meantime, her favorite TV programs are cooking shows, and she pages through cook books.
In her room at the Ronald McDonald House at the Jackson Memorial Medical Center, Marlie has a book bag packed for the day she returns home.
"She's happy she will go back to school," Antoine said, "because she will be like everyone else."
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