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.
Gina Eugene, left,
Ginnette Eugene, rear left, and Maleine Antoine, center, sing God Bless
America as Maleine's daughter Marlie Casseus, right, is wheeled to surgery
at Jackson Memorial Hospital, Miami, Thursday, Oct. 5, 2006. Marlie has
undergone several surgeries in Miami to remove a tumor-like mass that
engulfed her face. [AP]
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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."