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The boy's parents accept the risks of an operation to put his brain inside the skull.
By WES ALLISON
© St. Petersburg Times, published March 8, 2001
TAMPA -- Luz Dary Zuluaga and John Jairo Martinez have simple hopes for their son. They want to see him run and play with other kids in their neighborhood, go to school and not be ostracized, and, God willing, grow old.
A risky operation scheduled to begin this morning may allow him to do those things.
John Esteban Martinez, a good-natured 7-year-old from Colombia, suffers from a rare and debilitating birth defect called midfacial cleft syndrome. His skull failed to develop properly in the womb, leaving a fissure in his skull that his most of his brain has progressively squeezed through.
His brain is now a grapefruit-sized mass on the front left quarter of his head. It's possible that today's attempt to put the brain back into his skull could leave him dead or paralyzed, but his parents decided that doing nothing was worse.
"If you leave him like that, there is nothing ahead," Ms. Zuluaga, 31, said through an interpreter Wednesday afternoon as her son was evaluated by speech and physical therapists at St. Joseph's Hospital in Tampa.
The surgery has two jobs: to make John's striking appearance more socially acceptable and to protect him. Because much of his brain is covered by skin, a bad fall or accident could kill or debilitate him.
In the United States, this disorder usually is treated soon after birth, before it has a chance to progress to the dangerous level where John now finds himself.
He plays well with his family, but other children tease him, his parents said. The growth makes it difficult for him to see, because his left eye has been forced down by it, and he has trouble walking without leaning on a stroller.
He has been slow to develop mentally as well, and now has the intellectual capacity of a 3-year-old. But he is a happy boy who likes to swim, roll dice and ride in a car, his parents said.
The Martinez family lives in Medellin, one of Colombia's largest cities, where John Martinez, 33, is a security guard. He and John's uncle visited Miami in August in search of help for the boy, and a friend directed him to the office of U.S. Rep. Lincoln Diaz-Balart, R-Miami.
Diaz-Balart led them to Dr. Mutaz Habal, a well-known plastic surgeon who is considered an expert in this operation and who practices at St. Joseph's Hospital in Tampa. The congressman also secured visas so the family could come to the United States for the operation.
Habal, who has done two such operations in the past month, and his partner in the surgery, Tampa neurosurgeon William Oliver DeWeese, are donating their services, as is Tampa Children's Hospital at St. Joseph's. The cost of the operation and John's recovery time, which could last three days to weeks, depending how his brain responds, could be tens of thousands of dollars, money the family does not have. They said they are very appreciative.
Surgery is scheduled to begin at 10 this morning and is expected to last five hours. Habal and DeWeese will move John's left eye to the proper location, reconstruct his nose and reopen the skull, then put his brain back where it belongs.
They then will rebuild and close his cranial vault using his own bone, as well as artificial materials. If all goes well, he could be out of the hospital in several days.
"I hope that he'll be able to relate to the other children and that he can walk and run and play go to school like regular children," his mother said.
Tampa Bay area residents might find John's story reminiscent of Maria Cortez, a then-3-year-old girl from El Salvador who had a tangerine-sized tumor removed from her face at All Children's Hospital in 1998. The delicate operation was risky but proved successful. At last report, Maria was healthy and doing well.