SPINE SURGERY

Ugandan teenager smiling days after complex spine surgery

2011-10-26T21:45:00Z 2014-08-25T15:30:29Z Ugandan teenager smiling days after complex spine surgeryBy SUSAN OLP Of The Gazette Staff The Billings Gazette

Roger Ssembatya has suffered more trials in 15 years than most people experience in a lifetime.

But on Wednesday, the Ugandan youth had only words of thanks for the many people who have helped him on his journey of healing.

"God bless everyone, and God bless those doctors, and God bless Riverside Middle School, too, and God bless this hospital and God bless all my friends," he said from his bed on the fourth-floor pediatric unit at St. Vincent Healthcare.

Shy at first, Roger warmed up the more he talked about his life in Uganda and in Billings. Though in pain, he managed to smile at the people in his room by the time he finished chatting.

Standing on both sides of Roger's bed were two key players in his journey: Nadine Hart, a physician assistant at St. Vincent, and Terry Fettig, his American guardian and chairman of AIDSpirit in Billings. Without their help, the boy likely wouldn't be alive.

Roger's story goes back to his early childhood in the village of Bugogge, where he suffered a bout of tuberculosis of the spine. The untreated illness gradually bent his spine nearly in half, making walking impossible and breathing increasingly difficult.

He also lived a childhood of neglect that left him malnourished and underweight. When Hart met Roger in 2006, his legs, contracted underneath him, were covered in open wounds.

"They brought him to me in a sheet — he had never owned any clothes," Hart remembered. "He had the most pained look in his eyes, I just could not get over that."

Hart had traveled to Uganda on an annual trek to offer medical care and training. She did what she could for Roger and taught the nurses there how to care for him.

When she returned, she and others began to send support money to help improve his nutrition and his health, and people kept a closer eye on him, she said. She told Fettig about Roger, and when Fettig went to Uganda to help start a sponsorship program to help children go to school, he met and fell in love with Roger.

He helped find more services for the boy, got him a bed and a wheelchair.

"And then from that point, we teamed up and followed him for a few years over there," Hart said.

Their work included getting Roger admitted to a rehabilitation hospital to try to straighten his legs so he could walk. Ultimately, that didn't work, and Hart and Fettig decided Roger's best chance at better health would be in Billings.

Hart brought Roger's X-rays and medical records to St. Vincent, and doctors agreed to evaluate his condition. So with help from others, Hart and Fettig raised $5,000 to help bring the boy to the United States in February 2010.

Roger is still very small, weighing only 44 pounds. He lives with Fettig and he goes to Riverside, where he is in eighth grade and thoroughly enjoys his classes and all the friends he's made. He also worked hard to learn English, which he employs these days with no problem.

Over 18 months, a host of physicians evaluated and treated Roger. Physical therapists helped relieve Roger's contractures — an abnormal shortening or shrinking of muscle and tendon — to make it easier for him to sit in his wheelchair.

Tests showed his lung function was only at 35 percent.

"That became a life-limiting factor," Hart said. "That's what he would die from, his lungs."

She consulted with Dr. Gregory McDowell, an orthopedic surgeon with Ortho Montana in Billings.

"I've seen pediatric deformity for about 20 years, but this is the worst case that I had seen," McDowell said Saturday morning, a day after he helped perform surgery on Roger.

The diagnosis was post-tubercular kyphosis, a spinal deformity, in which Roger's spine was bent at about 160 degrees. It compressed his spinal cord, causing near paralysis and restricting his breathing.

Such a deformity is "extraordinarily rare" in Montana, McDowell said. So he asked Dr. Oheneba Boachie, a renowned spinal surgeon McDowell knows in New York City, if he'd be willing to see Roger.

Boachie, an orthopedic spine deformity surgeon, is professor of orthopedics at Cornell Medical School and works at the Hospital for Special Surgery.

"I'd consider him our leading surgeon, certainly in the United States if not the world, in managing this sort of problem," McDowell said.

So Fettig and Hart took Roger to New York City. Boachie evaluated Roger's condition and agreed not only to perform surgery, but to travel to Billings and operate at St. Vincent, all at his own expense.

In fact, the surgery and all of the medical care over the past 1-1/2 years in Billings have been donated.

Roger spent 11 days in halo traction before the surgery, to stretch his spine and improve his breathing. It also helped Roger gain 3 inches in height, Boachie said.

McDowell assisted Boachie in the complicated surgery on Friday. During the vertebral column resection, a portion of the spine was removed, and the spine was realigned and fused. Boachie was pleased with how it went.

"He's a tough kid, he did very well," Boachie said Saturday.

"We had a great team," Boachie said, praising the work of McDowell, the anesthesiologist and the others. "Everybody worked like clockwork, and it was a very good team effort to get it done."

Healing will take six months to a year, Boachie said. But he sees a positive prognosis for the boy.

"Roger is not going to be a soccer player, but at least he can go to Disneyland and not worry about pain or breathing or things like that," he said.

Boachie wouldn't make a long-term prediction for Roger, but said he knows adults who have suffered similar problems and lived into their 60s.

"He may not have a normal life span, but he will have a better quality of life and an improved life span," Boachie said. "If he had been left in Uganda, he probably would not be around."

Roger, awake in his bed on Wednesday, talked about how much he enjoys school, especially science and math. He talks about how much he enjoys the friends he has at Riverside.

He spoke about a trip he took back to Uganda, of teaching other children words in English and sharing candy and toys with them. He talked about his faith and what that means to him.

He said he was a little nervous talking to reporters, but he wasn't shy about expressing his thanks, for Hart and Fettig, for the doctors and the hospital and for all the people who have befriended him during his stay in Billings.

He said a prayer, asking God to bless all of them.

"And I thank you, everybody, in Jesus' name, amen," he said, smiling. "Thank you. Goodbye."

Copyright 2014 The Billings Gazette. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

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