by Liz Daube
Staff Writer
The Facing Futures Foundation is helping children with facial disorders lead healthier, more normal lives. A team of about 30 nurses and doctors, including several from Shands Jacksonville, will fly to Vietnam on March 24 to perform free operations for children whose faces have been disfigured by birth defects, accidents or other causes.
Dr. Barry Steinberg, chief of maxillofacial surgery at Shands, founded Facing Futures eight years ago. He started the organization to help young patients with facial disorders and no means for treatment.
“I consider myself very fortunate,” said Steinberg. “I think as a health care practitioner, I’m obligated to give back.”
Facing Futures focuses mostly on Vietnam, but Steinberg’s helped children from a variety of places, from Africa to Jacksonville. He said he hopes the foundation’s scope will continue to grow.
“There are plenty of places in the world that can use our help,” he said. “Surgery keeps getting bigger and bigger and more complex. They (doctors in struggling countries) have the ability to be good surgeons, but they don’t have the resources.”
Dr. Barrett Tolley, a member of the Facing Futures Vietnam trip team, said the organization tries to educate the surgeons in Vietnam. Members each bring a bag of medical equipment, and some of the supplies are left behind on purpose. In addition, the Facing Futures team uses active participation to teach the surgeons new techniques.
“The goal is someday we won’t need to go there,” said Tolley.
Misunderstanding is one of the major problems facing these children, Steinberg said. Facial disorders can have serious effects on a child’s schooling and social integration. Steinberg said some people aren’t educated about facial deformities, so they think the children are mentally disabled or frightening.
“There are a lot of kids in the villages over there that are treated as outcasts,” said Tolley.
Dr. Erik Reitter, another member of the Vietnam trip team, said many facial deformities carry health risks, as well. Facial disorders aren’t simply matters of appearance. Reitter said some children require help from a variety of specialists, from speech pathologists to neurosurgeons.
“We’re not fixing a crooked nose,” said Reitter. “We’re treating a bone structure that didn’t grow properly.”
According to Tolley, many facial disorders result from birth defects. He said birth defects are often genetic, so facial disfigurement may signal a larger health problem.
Research shows that birth defects may be more widespread than many Americans realize. A March of Dimes study released in January found that over 8 million children worldwide are born with genetically-related birth defects. That’s about 6 percent of all births.
“There are many children we can’t treat because of limited resources,” said Reitter. “We (wealthier Americans) don’t really understand what people have to live with every day.”
Steinberg said Facing Futures operates on 60-70 children each year. The team works 10-12 hours a day for 12 days. They evaluate patients for the first few days, then start treatment and surgery.
Safety concerns for the surgeons can be an issue, Steinberg said. He said the death of a surgeon in a similar organization scared the members about a decade ago.
“They sort of backed off a little bit,” said Steinberg. “That was one of the influences behind this organization. I wasn’t frightened enough not to go back. It (the death) turned out not to be anything other than natural causes, but it scared the people while they were there.”
This trip will be the first for Reitter and Tolley. Both said they received plenty of training and safety advice, and they weren’t worried about the trip.
“The flight’s a little scary,” said Tolley of the roughly 20 hour flying time. “Other than that, we’re excited.”
The pair recently arranged an 80’s-style fund-raiser at The Pearl. Tolley said they raised $3,400 to help cover their costs in Vietnam (each surgeon’s travel expenses total about $2,700). Reitter and Tolley said they plan to continue working with Facing Futures for a long time.
“Doing things like this is infectious,” said Steinberg. “I think they’ve caught the bug.”