Doctors help 2d Haitian boy with rare growth

Before June, the 15-month-old wasn’t even trying to crawl. A growth the size of an adult’s fist hung down from between his eyes, blocking his vision. Now, after a remarkable journey from Haiti to an operating room at Children’s Hospital Boston, the only clue to the disfiguring and dangerous abnormality is a slight line across the bridge of his nose and a faint zigzag of stitches beneath his short black hair.

Jean Osse is the second child from Haiti to have a rare growth called an encephalocele removed by Dr. John Meara, chief of plastic surgery at Children’s Hospital and a regular participant in medical missions to that country.

Last year, Meara operated on Dumanel Luxama, removing a softball-sized protrusion that threatened to damage his developing brain. Meara had spotted the boy in line at a clinic in Haiti and recognized his unusual deformity as one he had specialized in treating while working in Australia some years ago. Dumanel was at the clinic that day after his father sold the family’s two cows to pay for a 14-hour bus ride to get medical help.

After the Globe reported on Dumanel’s story in November, almost $2,000 in donations flowed in, allowing the family to not only invest in a bull, but also to repair their simple home and to set some money aside in case Dumanel needs more care.

Dumanel, who will turn 2 next month, is walking and talking, hitting developmental milestones that were delayed by his condition. He has monthly checkups and so far has had only an ordinary fever, said Anne Beckett, patient coordinator for Partners in Health, the Boston-based organization that coordinated his trip.

The publicity helped more than the Luxama family. A Florida doctor who regularly visited another rural part of Haiti saw the story and thought of Jean Osse, whose encephalocele was even worse than Dumanel’s.

“You can’t underestimate the value of that article,’’ Meara said. “That’s why the second child was able to get care.’’

Jean Osse and his mother, Miliana Rocher, arrived here in June. He needed two surgeries: one to remove the growth and another to place a shunt in his brain to relieve pressure. Meara, other Children’s doctors, and the hospital donated their services. After the operations, the boy and his mother stayed at the Brockton home of Dr. Hermide Pierre Mercier, who had also hosted Dumanel and his father.

On Sunday, they flew to the Haitian capital of Port-au-Prince, where they are staying with a Partners In Health host while the group looks for a house to rent close to one of its clinics. The family used to live in a village so remote that it took six hours to walk to a town that was an eight-hour bus ride away from the nearest clinic.

“I feel very good - and happy,’’ Rocher said in an interview before leaving, as Mercier translated. “Right now I see him doing very, very well, but I’m a little anxious about the shunt.’’

The family and doctors in Haiti will be alert for signs of infection, a concern until the pressure resolves with time.

Jean Osse and Dumanel are two of more than 2 million patients whom Partners in Health doctors see annually in Haiti. Very few come to the United States for care, Beckett said.

Meara, who trained with Partners in Health founder Dr. Paul Farmer at Brigham and Women’s Hospital, said the contrast between healthcare resources in Haiti and the United States is staggering.

“You do something for one, two, three hours that makes a dramatic difference,’’ Meara said about surgery for cleft lip or other problems that are more common than encephaloceles. “It can be a profound change, which is something you sometimes take for granted when you work here.’’