Butterfly Foundation in the News

Restoring Lives: A local group gives new hope to Dominican children with spinal deformities

The Journal News (February 21, 2006)
By Linda Lombroso


Two years ago, Kelvin Lugo was in a bad way. A severe case of scoliosis had curved the 17-year-old’s spine so much that it was pressing down on his lungs. But in his country, the Dominican Republic, there were no doctors trained to perform the complex surgery that would straighten out his back—until the Butterfly Foundation stepped in.

Since 2003, the nonprofit organization has led 12 missions to the capital city of Santo Domingo, performing life-saving surgery on Dominican children whose spinal deformities would otherwise have been neglected. Each mission – led by Hawthorne orthopedist Dr. Andrew Moulton, an instructor at New York Medical College and a spine surgery specialist at Westchester Medical Center, and his wife, former Dominican TV host Geraldine Collado – has included surgeons, anesthesiologists, neurophysiologists and representatives from Medtronic, which donates the titanium alloy implants used in the procedures.

Moulton, 37, and his team have also trained three Dominican surgeons who are now qualified to perform the delicate spine surgery themselves.

Yet for Dominican orthopedic surgeon Dr. Francisco Valdez, who assists on each mission, the Butterfly Foundation (known as Fundacion Mariposa in Spanish) has been invaluable from the start.

“The most important thing is the kids they operate on are poor kids. They have no money at all,” says Valdez, speaking by phone from Santo Domingo. “I wish they could come once a month, because there are so many patients with scoliosis. I think the last time we saw .75.”

IN fact, says Moulton, children in the Dominican Republic have a high incidence of adolescent idiopathic scoliosis, a lateral curvature of the spine that appears before puberty. Overall, more than 10,000 children of the country’s 9 million residents have scoliosis.

In the United States, where the incidence of scoliosis is about half that of the Dominican Republic, says Moulton, many cases can be successfully treated with a brace worn during a child’s growth spurt. In the Dominican Republic, the spinal deformity is generally caused by one of two factors: tuberculosis, which can damage the bones in the spine, and an inherited condition called spondylocostal dysplasia or Jarcho-Levin Syndrome. Early intervention is rare, due to doctors’ lack of training and proper equipment.

“They feel socially outcast because they’re deformed, they’re freaks,” says Moulton.

Dominican girls’ hopes of getting married and having a family are quickly put aside. “It’s hard to do that with a deformed body, with a big hump on your back,” he says.

Each time members of the Butterfly Foundation visit Santo Domingo – most recently last month – families travel miles in hopes of being selected for surgery. The most heart-wrenching part if each mission, say Moulton and Collado, is deciding on the dozen or so patients whose conditions are most dire, and turning away the rest.

For those who are selected, the impact is immediate. “We had a patient we chose for surgery and she started crying, the mother started crying,” says Moulton. “We started to tell her, ‘It’s not so bad, you will be better son, you’ll be straight, you’ll be taller, and the mother said, ‘No, we’re not worried about the pain. We’re just so happy we got chosen.’”

When Kelvin came in for surgery in July 2004, Moulton and Collado knew his family situation was particularly bleak. Years earlier, his mother had gone to find work in Puerto Rico, says Collado, leaving behind two children and a husband who drank too much. After Kelvin’s father disappeared, a neighbor took in the teenage boy and his brother. Meanwhile, Kelvin’s condition continued to worsen.

“I couldn’t go to school easily,” says Kelvin, speaking by telephone in Spanish as Collado translates. “The school was far away and I couldn’t walk for very long before my back started to hurt.”

Collado, 27, still remembers watching Kelvin being wheeled into surgery. “He came into the operating room with a rosary wrapped around his wrist,” she says. “Seeing that in a young kid, to be so devoted and having so much faith that this was going to be his opportunity for a new life, that stole everybody’s heart.”

But the operation itself wasn’t easy. Kelvin’s surgery involved the removal of one rib and an incision that ran from his neck to his buttocks. “I can’t think of anything more painful, honestly. If you were trying to devise some sort of torture than scraping all the muscle off the bones in the back,” says Moulton. “But these kids do remarkably well. They’re very resilient, very strong-willed, because I think the majority of them are poor. Their life is just hard.”

Although surgery lasts from 8 to 15 hours, depending on the complexity of the procedure, patients are out of bed the next day, says Moulton, often standing two inches taller. When they visit with doctors on a subsequent Butterfly Foundation mission, they are visibly transformed. Girls who came in with downcast eyes and baggy clothes return wearing makeup and tighter outfits. Boys show up with renewed confidence. And many teens like Kelvin become members of Friends of the Butterfly, offering emotional support to new patients undergoing surgery.

That ability to change young lives has kept Moulton and his team coming back to the Dominican Republic every few months. But taking part in a medical mission is not enough, says Moulton – something he realized as a young doctor doing club-foot surgeries in Honduras.

“Every time we went, there were more kids than the time before. I felt like a drop in the bet,” he says. “Not to be jaded, but it’s almost an ego trip for people that do it. It’s not really as effective until you teach the people, you create an environment.”

Moulton and his team recently started offering genetic testing to Dominican families who came in for scoliosis surgery, to see if other family members are afflicted with the gene for Jarcho-Levin Syndrome. He’s also expanded his work with the Butterfly Foundation to a program called SCRUBBs (Spine Care Relief United Beyond Borders), which advocates medical help for spine patients worldwide.

“Basically, the goal of SCRUBBS is to help other surgeons develop similar projects so they don’t have to reinvent the wheel,” says Moulton. As chairman of the program, which is affiliated with the North American Spine Society, he’s already lead two missions to Malawi, Africa, and hopes to travel to Vietnam later this year.

Although the frequent trips force Moulton to leave his White Plains home and step away from his work in Westchester, he can’t imagine life any other way. “I feel like I was meant to do it,” he says. “That it’s not a coincidence.”

For Kelvin Lugo, life has also taken a decisive turn.

He is now 19 and a full-time engineering student at Apec University in Santo Domingo. He hopes to graduate in three years. “In the future, if I progress with my own life, I will be able to help other children who were like me before the surgery and didn’t have anything,” he says.

“Before I used to see life in a gray color. Now … I see life in a hopeful color.”

Two years ago, Kelvin Lugo was in a bad way. A severe case of scoliosis had curved the 17-year-old’s spine so much that it was pressing down on his lungs. But in his country, the Dominican Republic, there were no doctors trained to perform the complex surgery that would straighten out his back—until the Butterfly Foundation stepped in.

Since 2003, the nonprofit organization has led 12 missions to the capital city of Santo Domingo, performing life-saving surgery on Dominican children whose spinal deformities would otherwise have been neglected. Each mission – led by Hawthorne orthopedist Dr. Andrew Moulton, an instructor at New York Medical College and a spine surgery specialist at Westchester Medical Center, and his wife, former Dominican TV host Geraldine Collado – has included surgeons, anesthesiologists, neurophysiologists and representatives from Medtronic, which donates the titanium alloy implants used in the procedures.

Moulton, 37, and his team have also trained three Dominican surgeons who are now qualified to perform the delicate spine surgery themselves.

Yet for Dominican orthopedic surgeon Dr. Francisco Valdez, who assists on each mission, the Butterfly Foundation (known as Fundacion Mariposa in Spanish) has been invaluable from the start.

“The most important thing is the kids they operate on are poor kids. They have no money at all,” says Valdez, speaking by phone from Santo Domingo. “I wish they could come once a month, because there are so many patients with scoliosis. I think the last time we saw .75.”

IN fact, says Moulton, children in the Dominican Republic have a high incidence of adolescent idiopathic scoliosis, a lateral curvature of the spine that appears before puberty. Overall, more than 10,000 children of the country’s 9 million residents have scoliosis.

In the United States, where the incidence of scoliosis is about half that of the Dominican Republic, says Moulton, many cases can be successfully treated with a brace worn during a child’s growth spurt. In the Dominican Republic, the spinal deformity is generally caused by one of two factors: tuberculosis, which can damage the bones in the spine, and an inherited condition called spondylocostal dysplasia or Jarcho-Levin Syndrome. Early intervention is rare, due to doctors’ lack of training and proper equipment.

“They feel socially outcast because they’re deformed, they’re freaks,” says Moulton.

Dominican girls’ hopes of getting married and having a family are quickly put aside. “It’s hard to do that with a deformed body, with a big hump on your back,” he says.

Each time members of the Butterfly Foundation visit Santo Domingo – most recently last month – families travel miles in hopes of being selected for surgery. The most heart-wrenching part if each mission, say Moulton and Collado, is deciding on the dozen or so patients whose conditions are most dire, and turning away the rest.

For those who are selected, the impact is immediate. “We had a patient we chose for surgery and she started crying, the mother started crying,” says Moulton. “We started to tell her, ‘It’s not so bad, you will be better son, you’ll be straight, you’ll be taller, and the mother said, ‘No, we’re not worried about the pain. We’re just so happy we got chosen.’”

When Kelvin came in for surgery in July 2004, Moulton and Collado knew his family situation was particularly bleak. Years earlier, his mother had gone to find work in Puerto Rico, says Collado, leaving behind two children and a husband who drank too much. After Kelvin’s father disappeared, a neighbor took in the teenage boy and his brother. Meanwhile, Kelvin’s condition continued to worsen.

“I couldn’t go to school easily,” says Kelvin, speaking by telephone in Spanish as Collado translates. “The school was far away and I couldn’t walk for very long before my back started to hurt.”

Collado, 27, still remembers watching Kelvin being wheeled into surgery. “He came into the operating room with a rosary wrapped around his wrist,” she says. “Seeing that in a young kid, to be so devoted and having so much faith that this was going to be his opportunity for a new life, that stole everybody’s heart.”

But the operation itself wasn’t easy. Kelvin’s surgery involved the removal of one rib and an incision that ran from his neck to his buttocks. “I can’t think of anything more painful, honestly. If you were trying to devise some sort of torture than scraping all the muscle off the bones in the back,” says Moulton. “But these kids do remarkably well. They’re very resilient, very strong-willed, because I think the majority of them are poor. Their life is just hard.”

Although surgery lasts from 8 to 15 hours, depending on the complexity of the procedure, patients are out of bed the next day, says Moulton, often standing two inches taller. When they visit with doctors on a subsequent Butterfly Foundation mission, they are visibly transformed. Girls who came in with downcast eyes and baggy clothes return wearing makeup and tighter outfits. Boys show up with renewed confidence. And many teens like Kelvin become members of Friends of the Butterfly, offering emotional support to new patients undergoing surgery.

That ability to change young lives has kept Moulton and his team coming back to the Dominican Republic every few months. But taking part in a medical mission is not enough, says Moulton – something he realized as a young doctor doing club-foot surgeries in Honduras.

“Every time we went, there were more kids than the time before. I felt like a drop in the bet,” he says. “Not to be jaded, but it’s almost an ego trip for people that do it. It’s not really as effective until you teach the people, you create an environment.”

Moulton and his team recently started offering genetic testing to Dominican families who came in for scoliosis surgery, to see if other family members are afflicted with the gene for Jarcho-Levin Syndrome. He’s also expanded his work with the Butterfly Foundation to a program called SCRUBBs (Spine Care Relief United Beyond Borders), which advocates medical help for spine patients worldwide.

“Basically, the goal of SCRUBBS is to help other surgeons develop similar projects so they don’t have to reinvent the wheel,” says Moulton. As chairman of the program, which is affiliated with the North American Spine Society, he’s already lead two missions to Malawi, Africa, and hopes to travel to Vietnam later this year.

Although the frequent trips force Moulton to leave his White Plains home and step away from his work in Westchester, he can’t imagine life any other way. “I feel like I was meant to do it,” he says. “That it’s not a coincidence.”

For Kelvin Lugo, life has also taken a decisive turn.

He is now 19 and a full-time engineering student at Apec University in Santo Domingo. He hopes to graduate in three years. “In the future, if I progress with my own life, I will be able to help other children who were like me before the surgery and didn’t have anything,” he says.

“Before I used to see life in a gray color. Now … I see life in a hopeful color.”

Butterfly Foundation


With the Butterfly Foundation, Dr. Moulton and his colleagues teach spine surgery in communities that need it around the world. See a short, introductory video, then learn more about the foundation below.

Video Documentary

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