WASHINGTON – It's a delicate and daring experiment: Could doctors switch a leg nerve to make it operate the bladder instead? Families of a few U.S. children whose spina bifida robs them of the bladder control that most people take for granted dared to try the procedure — and early results suggest the surgery indeed may help, in at least some patients.
With the technique, pioneered in China, the kids are supposed to scratch or pinch their thigh to signal the bladder to empty every few hours. But surprisingly, some youngsters instead are starting to feel those need-to-go sensations that their birth defect had always prevented.
"It feels like this little chill kind of thing in me," marvels 9-year-old Billy Kraser of Scranton, Pa.
"When he goes in there and he's dry and he's clean, it's such a triumph," adds his mother, Janice Kraser. "I'll hear him going, 'Yesss!'"
The U.S. pilot study consists of just nine spina bifida patients and still is tracking how they fare — no one is finished healing yet. But already desperate families are lining up for a chance at this nerve rerouting, even as William Beaumont Hospital in Royal Oak, Mich., is trying to raise money to expand the study and provide better evidence.
"If it works, it'll be a huge improvement in the management of patients with spina bifida," says Dr. Kenneth Peters, Beaumont's urology chairman, who has a waiting list of nearly 100 would-be patients.
But, "it's imperative that we prove whether this works or not" before accepting all-comers, he stresses. "I have many patients who would pay cash and have it done. I refuse to do that."
Spina bifida occurs when the spinal column fails to close properly. It's a birth defect that affects about 1,300 babies a year, with varying degrees of leg paralysis and other problems.
Because bladder and bowel function depend on nerve messages zipping to and from the brain via the spinal cord, most spina bifida patients have trouble. Some are totally incontinent, some partially. Others have the opposite problem and must empty the bladder with catheters every few hours, leaving them vulnerable to urinary tract infections and life-threatening kidney damage. There are few good treatments.
Enter Dr. Chuan-Gao Xiao of China's Hauzhong University of Science and Technology. The U.S.-trained surgeon developed a way to bypass the brain: Cut open a spot on the lower spine and sew two normally unrelated nerves together — a lumbar nerve that acts in the thigh to a sacral nerve that would normally squeeze the bladder.
If they fuse well, then scratching the thigh can send a signal directly to the bladder side of the new nerve bridge, Xiao's early research found. More than 1,000 patients in China are thought to have undergone the procedure; Xiao has reported results on only a fraction in respected urology journals.
Beaumont's Peters traveled to China to learn Xiao's technique and began the pilot study thanks to a private donor who financed the $40,000-a-patient surgery.
His nine spina bifida patients — plus an additional three adults with spinal cord injuries — emerged from surgery to anxiety: It can take months for the nerves to heal, even longer in the adults who are still waiting.
But a year later, seven spina bifida patients had their bladders contract as they scratched a leg. All those who'd needed medication for overactive bladders have quit the drugs. Some who had always needed catheters, like Billy Kraser, are starting to urinate on their own. Fecal continence is improving, too.
One patient so far is what Peters calls a home run, a 14-year-old girl who no longer suffers embarrassing leaks or needs catheters.
The main side effect: Some leg weakness after surgery, enough to put Billy in a wheelchair for a month until he could navigate his usual lower-leg braces again. Another patient developed what appears to be a permanent dragging foot.
A standing-room-only crowd packed a recent meeting of the American Urological Association to hear Beaumont's early results.
"The promise is great," says Dr. Kenneth Glassberg, a pediatric urologist at New York's Columbia University Medical Center who has long known Xiao and operated with him in China.
Glassberg, too, is getting surgery requests from U.S. families but stresses that it's not yet clear how many patients would even be candidates, depending at the very least on where the spinal column is damaged.
The Spina Bifida Association is bringing Xiao to Florida in March to address an international meeting of about 500 doctors involved in spina bifida care — but also cautions families to await the research, particularly on the procedure's safety.
Back in Pennsylvania, Janice Kraser laments the lack of research funding, saying finding a good treatment would more than pay for itself if patients avoid expensive kidney damage. She's a nurse who home-schools Billy — he can't be catheterized at schools his siblings attend — while working nights and weekends in part to raise the thousands of dollars the family has spent traveling to Beaumont for follow-up testing.
Billy can't yet completely empty his bladder, but has far fewer urinary tract infections and enough control that his mother anticipates him trying underwear soon.
"It's very cool," Billy says of the study. "I did good and was a trouper."
6 months ago