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26893: Hermantin(News)Haitian teen's hope in tumor surgery (fwd)


From: leonie hermantin <lhermantin@hotmail.com>

Posted on Wed, Dec. 14, 2005


MEDICINE
Haitian teen's hope in tumor surgery
A Haitian teenager begins a series of operations today in Miami that will remove a large, bony growth from her face and, with any luck, give her a chance at a normal life. 
BY ELINOR J. BRECHER
ebrecher@herald.com
This morning, a surgeon will slice into the tortured face of a 14-year-old Haitian girl so disfigured by a tumor-like growth that she can barely swallow or breathe and is going blind.
In a 12-hour operation, doctors at Miami's Holtz Children's Hospital will begin ''debulking'' the 16-pound protuberance that makes Marlie Casseus look as if a large eggplant was somehow inserted under her facial features.
It's sure to be ''extremely bloody,'' according to oral/maxillofacial surgeon Dr. Jesus Gomez, who will use a saw and a scraping tool called a curette.
''We will open her face and grab as much of the mass as we can,'' Gomez said during a University of Miami/Jackson Memorial Medical Center press briefing Tuesday. ``This is a big surgery, and I want to keep expectations low.''
At this stage -- the first of several operations -- the goal for Marlie is not beauty, Gomez explained; it's saving her sight, endangered because the growth is invading the left eye socket and pressing on the optic nerve. 

FIRST STEP
During a procedure last month after she arrived in Miami from Port-au- Prince, Marlie's labored breathing was eased by a throat tube.
Malnourished when she arrived, she stands about 5-foot-2 and weighs 80 pounds, with the tell-tale ''cafe au lait'' skin spotting of McCune-Albright syndrome: a genetic condition that includes the uneven bone growth of polysostic fibrous dysplasia and endocrine abnormalities.
She's been getting liquid nourishment, which has helped her malnutrition but supercharged the aggressive growth, now 15 percent bigger, Gomez said. 

''She has been depressed and overwhelmed,'' he added.
He cautioned that surgery won't cure Marlie's underlying condition or guarantee that the painful facial tumor won't recur.
''The speed of regrowth is unpredictable,'' Gomez said. He's done similar surgery before, but said that such a huge polysostic fibrous dysplasia tumor ``has not been reported.'' 

LIFE LIKE THIS
Marlie is the middle of three sisters, said Josephine Mora, community outreach manager for the Jackson Memorial Foundation's International Kids Fund.
The fund raised $95,000 to underwrite Marlie's treatment, which will include restructuring her jaw, a process that will cost her her teeth, one of which protrudes through her hugely swollen bottom lip.
She left school five years ago and has had to hold her unwieldy head up with her hands. She so hated the sight of herself that ''her father had to take down the mirrors in the house,'' said Mora.
Even one of the people who brought Marlie to Miami nearly bolted in horror at the first glimpse of her.
Gina Eugene was taken to the family's home and heard Marlie before she saw her, though she wasn't sure what she was hearing.
''It was a grunting noise'' from behind a curtain, she recalled at the press briefing.
' `Is it an animal? A monster? Will it harm me?' '' Eugene wondered. ``I almost ran, but something urged me to stay.''
Eugene and her twin sister, Ginette Eugene, created Good Samaritan for a Better Life, a South Florida-based nonprofit that seeks medical treatment for destitute children from their native Haiti.
The sisters flanked Marlie's mother, Maleine Antoine, dressed in a striped T-shirt, flowered skirt and plastic sandals. Dissolving in tears, she said in Creole that she had no hope in Haiti for her daughter.
'I did everything I could to find help. There was no way out. . . . I don't know how to thank everybody for this. . . . She asks me all the time, touching my face, `Why?' '' Her other daughters, 8 and 15, 'are always singing, `God Bless America,' '' said Antoine, steadying herself against Gomez.
Following today's surgery, Marlie will spend about a week in intensive care. Her mother, who'll be living at the Ronald McDonald House on the Jackson campus until Marlie completes at least two follow-up procedures, will remain by her side.