Adam Byrum is a 10-year-old kid nicknamed "Wheels." He jumps curbs, flies off ramps, drives a motorized dirt bike, and is the limbo champion at school. He also frankly calls himself an "experiment."
Thursday and Friday, Adam and a group of other children were literally rewired by surgeons at All Children's Hospital. Nerves in their spinal cords were rerouted and reconnected in an attempt to rescue them from the invisible hells of bladder and bowel paralysis. The rewiring surgery is imported from China. It's experimental, it's expensive, it's uninsured.
It has been attempted on only a handful of American children with mixed results.
Now it's the heart of a three-year study at All Children's that may eventually involve 100 children who suffer from spinal cord injuries or the birth defect spina bifida. Surgeons launched the project with eight operations, including Adam's.
Pediatric urologist Yves Homsy and neurosurgeons Gerald Tuite and Luis Rodriguez traveled to China last November to learn the rewiring procedure. They brought its inventor here to offer advice during the first eight surgeries. "I'm sure there are skeptics among us," Homsy told a gathering of doctors on Thursday night. "I'm not the least among them." But he said it offers a hope that both doctors and parents are desperate for.
Adam Byrum is also not the least among the skeptics. This rewiring was his 19th surgery since a tumor appeared on his spinal cord when he was 9 months old. He lost a kidney last year and needs dialysis three times a week, each dialysis requiring a two-hour round-trip from his home in Thonotosassa. He is on a kidney transplant list.
He is a clear-eyed, hardened medical veteran, who doesn't smile when he uses the word "experiment."
But he is also as daring as they come. Adam won that school limbo championship in a wheelchair.
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The rewiring is called the "Xiao procedure." It was invented by Chuan-Guo Xiao, a urologist who has performed the surgery on about 1,500 children and adults in China who are paralyzed by spinal cord injuries or suffer from spina bifida.
The Xiao procedure is meant to bring relief to people with paralyzed bladders and bowels. It doesn't just get a patient out of diapers. It alleviates the ravages of urinary infections and kidney failure. Many parents of children with spina bifida fear their kids are doomed to dialysis before they turn 20.
The surgery sounds outrageous. It involves rewiring the spinal cord so that sacral nerve roots leading to the bladder and bowels are spliced to a lumbar nerve root leading to the thigh.
If it works, the results are weird, but phenomenal. The bladder and bowels are activated when the patient vigorously scratches a spot on his or her thigh.
Xiao claims an 87 percent success rate.
The Xiao procedure was made a pilot study two years ago at the William Beaumont Hospital in Royal Oak, Mich. Surgeons performed the Xiao on nine kids with spina bifida and three with spinal cord injuries. Funds were raised to cover the cost of each surgery — between $40,000 and $50,000. The team was led by the hospital's urology chairman, Kenneth Peters, who had traveled to China.
Peters, Xiao and the All Children's surgeons will speak at the First World Conference on Spina Bifida Research this week in Orlando.
By telephone last week, Peters called the results of the pilot at Beaumont "mixed."
Twelve children got the surgery — three with spinal cord injuries, nine with spina bifida. The three with spinal cord injuries were not helped by the procedure. Seven of the nine with spina bifida saw "marked improvement." One of them was a "home run," a girl who achieved complete continence.
Peters said the major complication was leg weakness that developed among eight of the nine with spina bifida. All had been able to walk before the surgery. They often required intense physical therapy, Peters said, "just to get them back to baseline." One child developed drop foot, meaning he could not raise his foot when he walked.
"We knew there could be complications going in," he said, "but it was still frustrating."
When Peters addresses the conference this week, he will emphasize caution. Parents are desperate for help, he said. But because of the unknowns, "if a parent walked into my office and stuck $50,000 in my face, I'd have to say no."
The surgeries should continue, he said, only under the strictest research protocol until U.S. doctors see the kind of results that Xiao reports in China. Beaumont will perform four more Xiao procedures in May.
Peters: "Do the benefits outweigh the risks? I'm not ready to say that. It's very easy to be wowed by it. I was wowed in China when I saw Dr. Xiao's data. I'm still wowed, but my 'wow' is a little more tempered."
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The cautious findings in Beaumont and virtual absence of other U.S. data prompted intense debate at All Children's. Urologist Homsy said the three-year study had to go before the hospital's Institutional Review Board and was okayed only after lengthy review and a set of strict research conditions.
Most of the children being chosen are already in wheelchairs, so complications of leg weakness and drop foot will be less of a concern.
All of the spina bifida children require spinal cord surgery anyway. Spina bifida is a birth defect that occurs early in pregnancy. Two sides of the embryo's spine fail to grow together, leaving an opening. The spinal cord pushes through the opening, destroying many nerve ends. Soon after birth, surgeons close the opening. But that leaves scar tissue that can cause later neurological problems. Kids have to be operated on as they grow to trim away the scar tissue. The procedure is called "detethering."
Except for Adam Byrum, who doesn't have spina bifida, the other seven children operated on this week needed detethering.
Their parents were told that the All Children's study is a blinded one. That means there is a control group that gets the detethering, but does not get the Xiao procedure. The parents won't know who got what until the study is over. Even Homsy doesn't know which of the spina bifida children are in the control group or the Xiao group.
The only kid who knows he got the Xiao is Adam.
One of the children who doesn't know is 4-year-old Sojourna Covelli of Valrico. She was born with a hole in her back to a 13-year-old mother. She was taken in as a foster child by Linda and Richard Covelli, who care for three other foster children with medical needs.
The Covellis call Sojourna "Journey." They adopted her about a year ago. She has had 18 surgeries. She was operated on Friday morning.
The Covellis know the odds are only 50-50 that she got the Xiao.
"I'll take those odds any day," Linda Covelli said.
The Covellis believe she will get the surgery eventually, even if she is in the control group. But they say they have prayed so hard they are sure that God got her in the Xiao group.
They even bought Journey her first pair of Hannah Montana underpants.
"What are we here for?" Linda Covelli asked her as they waited for surgery on Friday.
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Thursday, Adam Byrum lay cloaked in blue fabric as lead neurosurgeon Sarah Gaskill operated. Other lead surgeons last week were Tuite and Dr. Carolyn Carey. All that could be seen of Adam were his small bare feet and his open spinal cord. Xiao watched on a giant TV monitor. Adam was there for three hours.
After his Xiao, Adam spent Thursday and Friday in intensive care and on dialysis. He slept most of the time.
He was doing fine.
He has never complained about his many surgeries, his mother, Toni, said, though "he has said he's sick and tired of it." When he arrived at All Children's last week, he was wearing a "Just Do It" T-shirt.
Now, the neurological healing and nerve regeneration will take at least eight months.
Then Adam will find out if he can change his life just by scratching his thigh.
John Barry can be reached at firstname.lastname@example.org or (727) 892-2258.