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    Days after surgery, brain swelling kills boy

    [Times photo: Toni L. Sandys]
    John Jairo Martinez and Luz Dary Zuluaga hold their son, John, before his surgery.


    © St. Petersburg Times, published March 14, 2001

    TAMPA -- The operation held the promise of a new life for John Esteban Martinez, a chance to live longer and attend school and, more or less, to look like the rest of us.

    But on Tuesday, his doctor sadly announced the Colombian boy did not survive it.

    By 9:30 a.m. Tuesday, it had become clear that John, 7, was brain dead, his doctor said, a victim of brain swelling that suddenly, unexpectedly set in three days after he underwent surgery to move his brain, rebuild his skull and reconstruct his face.

    Despite sailing through the seven-hour surgery Thursday and surviving the next 24 hours -- typically the most critical period -- John's condition began to deteriorate over the weekend, a result of the trauma his brain endured during the operation.

    "Sunday night, apparently, there was a sudden rebound brain swelling," said Dr. Mutaz Habal, the plastic surgeon who led the operation at Tampa Children's Hospital at St. Joseph's. "We used everything that we had. Unfortunately, it didn't work.

    "The brain is a very delicate organ."

    His parents, Luz Dary Zuluaga, 31, and John Jairo Martinez, 33, spent their son's last days shuttling between his room and the hospital chapel. Even as Habal announced his death to reporters Tuesday afternoon, John remained on life support, allowing time for his family to say goodbye and to determine the feasibility of donating his organs.

    He was expected to be disconnected from the machines later in the evening.

    [Times photo: Toni L. Sandys]
    "We used everything we had. Unfortunately, it didn't work" said Dr. Mutaz Habal.

    "It is very hard to take," Habal added. "We feel very bad for the family."

    John was born with a condition called mid-facial cleft syndrome, in which the skull does not form properly. In the United States, it usually is treated much earlier, before it progresses, when it's easier to fix.

    Over the years, John's brain had squeezed out of a fissure in his skull, forming a mass that dominated the left side of his face and displaced his left eye. His striking appearance made him an outcast among other children and contributed to developmental delays. He had the intellectual capability of a 3-year-old.

    And because that section of brain was covered only by a thin flap of skin, severe injury or death from a fall or accident was always a concern.

    On Thursday, Habal and Dr. William Oliver DeWeese, a Tampa neurosurgeon, removed the top of his skull and moved the brain mass back into the cranial cavity. To cover it adequately, they built a second-story to his skull using his own bone and artificial material, then aligned his left eye with his right eye and shifted his nose.

    The result, a photo showed, was a face that resembled most faces, although it was still swollen from the surgery. After the operation, Habal said John would always be somewhat deformed, but his brain would be protected, and he could begin therapy to encourage mental growth.

    Mutaz, who performs this type of surgery regularly, said the death rate usually is 1 to 3 percent, but John's age and condition gave him only a 50-50 chance of survival.

    The family, which includes a 14-year-old sister, lives in Medellin, where Martinez is a security guard. The doctors and Tampa Children's donated their services for the operation, which totaled more than $100,000.

    The family was put in touch with Habal, a renowed pediatric plastic surgeon, through a Miami congressman whom Martinez contacted during a trip to Florida in August.

    Tuesday's announcement was in sharp contrast to the jubilance of Thursday's news conference, when Habal confidently proclaimed the surgery "challenging" but successful. The boy's death also shocked and upset hospital staffers accustomed to happy endings for most such stories.

    Last week, as their son played with therapists trying to gauge his capabilities before surgery, Zuluaga and Martinez said they realized the risk but opted to go forward because John had no hope for a normal or long life without it.

    Late Tuesday afternoon, as they said goodbye to their son in the cheerfully decorated hospital ward, the couple told hospital staff they still believed they had made the right decision, said Karen Shea, director of patient services.

    "I think they came knowing it was a very difficult surgery," Shea said. They wanted to thank area residents for their support and generosity.

    A trust fund for John had been established at AmSouth Bank, and that money will remain with the family, the hospital spokeswoman said. The hospital did not know how much had been donated.

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