December 31, 2006
Haitian Girl Returns After Face Surgery
By JENNIFER KAY
PORT-AU-PRINCE, Haiti - 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.
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.