By Max Bearak
Dumanel Luxama a few days after surgery
to repair a hole in the front of his skull
In a cozy, sunny room on the ninth floor of Children’s Hospital in Boston, 11-month-old Dumanel Luxama happily coos and chortles as his father Almane stands beside him. Just a few days earlier, the little Haitian boy had undergone major surgery to prevent brain tissue from bulging through a hole in his skull.
Dumanel was born with a frontal encephalocele, a rare neurological defect. An irregular hole in the calvarium, or “skull cap,” allows brain tissue to protrude, resulting in an abnormally shaped head. Dumanel’s condition can be repaired in developed countries. But the operation cannot be performed in Haiti due to lack of funds, equipment and proper training.
When Dumanel was born last fall, Almane sold a piece of land and used the proceeds to buy a bus ticket to take his baby to Zanmi Lasante’s hospital in Cange, more than half a day’s journey from their home in Ti Riviere. Almane left behind his wife and his home in hopes of saving his boy.
“I am a proud father and he is my son," he said. "It is my duty to take care of him."
Dumanel Luxama with his father Almane
and Dr, John Meara before surgery
On a visit to Haiti in March, Children’s Hospital's Plastic Surgeon-in-Chief, Dr. John Meara, noticed Dumanel in the Zanmi Lasante hospital. Dr. Meara and other doctors donated their time and worked with PIH to organize free care for Dumanel at Children’s Hospital.
Through its Right to Health Care program, PIH has a history of bringing patients who cannot be treated at local sites to larger, better-equipped hospitals in the U.S. and elsewhere. The program demonstrates PIH’s commitment to the human right to health care and embodies the organization’s mission statement: “When a person in Peru, or Siberia, or rural Haiti falls ill, PIH uses all of the means at our disposal to make them well...Whatever it takes. Just as we would do if a member of our own family—or we ourselves—were ill.”
When Dumanel reached Boston, doctors discovered that he had another serious medical complication—an arachnoid cyst in his brain. The cyst, a collection of the fluid that bathes the brain, was about the size of an apple and would have to be drained during Dumanel’s surgery in Boston.
“It was good that we brought him up to Boston in time," Meara said. "The cyst could have caused dangerous pressure on the brain."
Over almost ten painstaking hours, Meara, a reconstructive surgeon, and Dr. Ed Smith, a neurosurgeon, operated on both the cyst and the encephalocele. Meara described the procedures as “extremely successful, yet very difficult.”
Dumanel stayed in the hospital for about two weeks after his surgery. He and his father will probably remain in Boston for several more months in case any complications arise.
For now, the Luxamas’ medical journey continues. Almane will continue to sleep on the cot beside Dumanel’s crib and Dumanel’s mother will keep waiting eagerly for her husband’s daily call so she can listen to the reassuring and joyful laughter of her baby.
[published September 2008]