Ten-year-old Adam Byrum has spent his life in and out of hospitals. "Five card draw, deuces wild." "He's either had 18 or 19 surgeries now." "It doesn't really feel like nothin'. Just hurry up and get it over with." At nine months, he had a cancerous tumor removed from his spine, leaving him paralyzed. "That would be a feeling I would not even wish my worst enemy to be upon. Never."
Now he's waiting for a kidney transplant. But first, he needs to gain control of his bladder. "Then the transplant will be less likely to fail." Doctors are turning to an experimental surgery called the xiao procedure. It works by rewiring nerves in the spine. "We take a small portion of the nerve that usually controls motor function or movement in the leg and we cut it and splice it to a nerve that usually controls bowel and bladder function." "So we're going to be connecting this nerve here, to this nerve here."
If successful, doctors say the results are bizarre but extraordinary. Adam would be able to scratch an area on his thigh to activate his bladder. In a U.S. pilot study 12 kids had the surgery -- with mixed results. More than half saw improvement, but those with spinal cord injury saw no change. In China doctors claim an 87-percent success rate. Results take six to 18 months. "I want him off dialysis. I want him healthy. I want him to be able to go to school five days a week. I don't think he does."
For now, he's keeping his mom busy. His nickname…"Wheels." A brave kid who rolls with whatever comes his way.
Adam's still waiting to find out if he can receive a new kidney. The biggest risk of the experimental surgery is leg weakness. The procedure costs between 40 and 50-thousand dollars and is not covered by insurance. The kids who saw the most improvement in the study had a condition called spina bifida, a birth defect that causes permanent disability.
BACKGROUND: A new surgery is helping patients who have suffered a spinal cord injury or were born with spina bifida regain control of their bladder and bowel function. Spina bifida is a serious birth defect that occurs when the tissue around the spinal cord doesn"t close properly. The spinal cord pushes through the opening, damaging nerve ends. It affects two out of every 1,000 births. After birth, surgeons close the opening but scar tissue is left behind, which can cause neurological problems. As kids grow, they must have a detethering procedure to trim away the scar tissue.
CONTROLLING BLADDER AND BOWEL MOVEMENTS: Many children with spina bifida and spinal cord injuries experience bladder and bowel dysfunction. Not many treatment options exist for a problem that can be especially damaging to children. "There has been very little progress over the past several decades in the treatment of bladder dysfunction," Gerald Tuite, M.D., a pediatric neurosurgeon at All Children's Hospital in St. Petersburg, Fla., explained to Ivanhoe. "The use of catheters was a huge breakthrough many years ago, but since then there have been medicines and other experimental things tried, but nothing has given people control of their bladder."
A new experimental option may hold promise. It's called the Xiao procedure, named after Chuan-Guo Xiao, a urologist in China. The surgery involves rewiring nerves in the spinal cord. "We take a small portion of the nerve that usually controls motor function or movement in the leg and we cut it and splice it to a nerve that usually controls bowel and bladder function," Dr. Tuite explained. If it works for patients with spinal cord injuries, they will be able to activate their bladder and bowels by vigorously scratching a spot on his or her thigh. "Patients who have spina bifida, professor Xiao has told us that it's not necessary for them to scratch in a certain distribution; that they will just regain control of their bowel and bladder spontaneously," Dr. Tuite said. A pilot study revealed one of the risks of the surgery for patients who were able to walk prior to it, was leg weakness. "Dr. Xiao has told us while initially they have weakness, over time the nervous system is able to compensate for that and usually … their foot function returns to where it was; but we as part of this study want to be absolutely sure we know what the risks are," Dr. Tuite said.
The safety and effectiveness of the procedure is currently being tested at All Children's Hospital in Tampa, Fla. So far, eight children are involved in the blind study: seven with spina bifida and Adam Byrum, who is paralyzed from a spinal cord injury. Since they have to have detethering surgery anyway, patients don't know if they've had the Xiao procedure performed. The only patient who does know is Byrum.
FOR MORE INFORMATION, PLEASE CONTACT:
All Children's Hospital
St. Petersburg, FL
(727) 898-7451
www.allkids.org
