29749: (news) Chamberlain: Haitian Girl-Operation (fwd)

[Bob Corbett <corbetre@webster.edu>]

From: Greg Chamberlain <GregChamberlain@compuserve.com>

   By JENNIFER KAY

   PORT-AU-PRINCE, Dec 31 (AP) -- As her cousins, sisters and parents
settled down at the kitchen table, Marlie Casseus surveyed the plates of
soft foods before her with a new attitude.
   She now could enjoy the balls of fried egg and cheese, beans and rice,
tomatoes sliced as thin as paper, and a cake with white frosting -- foods
once impossible to eat when a 16-pound tumor-like mass pushed outward from
behind her nose and mouth.
   The Christmas Day meal was one of the first in years where she did not
lay her heavy head on the family's table and slurp mashed-up morsels
through what was left of her mouth and only airway.
   The 14-year-old held her head up and spooned small bites of food into
her mouth. Haitian doctors had told her parents she would never do anything
this normal.
   Marlie underwent four operations in the past year at Holtz Children's
Hospital in Miami to remove the growth, recenter her eyes, define her nose
and rebuild her mouth and jaw so she could again swallow and speak. The
mass was replaced with titanium plates and a hard polymer customized to fit
under her skin as a synthetic skeleton.
   She will return to Miami in about six months for a checkup. There's no
sign of regrowth from the mass that threatened her life and stretched her
features so far apart that only her nostrils, eyes and a single tooth
cutting through her bloated upper lip were recognizable, according to her
doctors.
   "Marlie can eat now," her older sister Stellecie Casseus said through an
interpreter. "Before, Marlie used to feel different, between herself and
other people. Now Marlie may not feel that way because she can eat."
   Everyone knows how Marlie feels these days. She's finally talking, even
howling at the indignity of cold bath water on Christmas morning, after
more than two years of near silence since the growth pushed her tongue
behind her mouth and made each breath and meal a life-or-death struggle.
   Marlie emerged from Port-au-Prince's airport Dec. 23 as the sun was
setting, casting shadows on the dusty, potholed roads. Her mother softly
sang a French hymn as the sport utility vehicle they were riding in lurched
and sped toward the center of the Haitian capital, taking Marlie farther
away from the artificially lit sterility of the Florida hospital campus.
   She didn't come home completely cured. A rare form of polyostotic
fibrous dysplasia, a nonhereditary genetic disorder that causes bone to
balloon and jellify, affects every bone in her body: She is bowlegged, her
fingers and feet are swollen and crooked and one shoulder rises higher than
the other
   Still, Marlie -- who can't articulate consonants without teeth -- wants
to go to school, and she wants to be a cook, her mother, Maleine Antoine,
translates.
   Teeth implants are still at least two years away, after additional
surgeries on her nose and jaw; U.S. doctors are waiting for her to stop
growing before finishing a facial reconstruction they began last year.
   A small, curious crowd surrounded Marlie, her mother and nearly a dozen
of their suitcases and duffel bags in the airport parking lot. They asked
what the U.S. doctors had done for Marlie's face, which bears thin scars
around her nose and mouth but is more symmetrical and flattened than when
she left for Miami last year.
   After a French-language Mass at a nearby church the next morning, Marlie
indulged friends of her mother with hugs and smiles, but the peering stares
of beggar children outside sent her bolting in tears to hide in the pews.
   Those kinds of stares in public had forced Marlie to retreat from school
at age 12 and hide in her home for nearly two years, even from her
neighbors. They had not known she was coming home and were shocked to hear
her voice as she ambled across the broken concrete front yard they share.
Marlie tilted back her head to show them the scar on her throat from a
tracheotomy that had helped her breathe, and lifted her shirt to show
another scar near her belly button from the feeding tube.
   Like most other homes in Port-au-Prince, a concrete wall shields the
yard from the street. As relieved as they are that Marlie is no longer
burdened by the 16-pound mass and slowly braving the community that scorned
her disfigurement, her parents hope to shelter her behind that wall a
little longer.
   The family lives in a relatively middle-class neighborhood near the
center of Port-au-Prince, where the average citizen lives on less than $2 a
day. The city has been plagued by a recent wave of child kidnappings and
Marlie's father won't even allow 15-year-old Stellecie to leave the house
alone. He also brought an armed police officer friend to the airport to
pick up Marlie.
   It will not be easy holding Marlie back. Her mother brought home a
hospital wheelchair to push Marlie through the city's winding streets, but
the teen is getting stronger and walking longer distances without needing a
lift over the uneven pavement.
   She'll settle for tutoring from Stellecie, but she yearns to attend
school. The dark home is a comfortable refuge, but Marlie no longer wants
to hide.