Date: 11/10/2008
By LAURAN NEERGAARD
AP Medical Writer
WASHINGTON (AP) _ 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.”
___
EDITOR’s NOTE — Lauran Neergaard covers health and medical issues for The Associated Press in Washington.
Copyright 2008 The Associated Press.
Huntsville girl conquers spina bifida
Date: 11/3/2008 4:00 AM
By YVONNE BETOWT
The Huntsville Times
HUNTSVILLE, Ala. (AP) — On a recent Brownie outing to earn a disability awareness badge, Trish Switzer let her troop choose from blindfolds, ear plugs, leg weights, wheelchairs and walkers so they could be “disabled” during a scavenger hunt.
“After all the girls made their choices, (her daughter) Sarah said: ‘I want a disability,'” said Switzer with a laugh.
Sarah, 9, was born with spina bifida and walks with the help of braces on the lower parts of her legs. But she doesn’t accept the fact she is disabled.
Spina bifida is an opening in the spinal cord that causes full or partial paralysis, nervous system complications, bladder and bowel control problems, learning disabilities, depression and other issues.
The condition affects 70,000 Americans and was once considered a death sentence. But many, like Sarah, are leading near-normal lives.
Today, a pink Barbie wheelchair helps Sarah go long distances. She also is constantly accompanied by her Canine Companion dog, Bakari.
The Heritage Elementary School third-grader also enjoys water skiing, bowling and horseback riding.
After learning about Sarah’s birth defect, the Switzers had little time to mourn. That day they were told about an experimental fetal surgery in which doctors take the baby from the womb, perform the operation to close the opening in the spine, and return the baby to the womb so it can continue developing.
The surgeries took place on July 1, 1999, at Vanderbilt in Nashville. Sarah was born again on Aug. 22.
Trish and Sarah were featured in Life magazine because of the risky pioneering procedure.
Today, the surgery is still performed, both before and after birth, but the verdict is still out on which provides the best results. A study is under way by the National Institute of Child Heath and Human Development to determine the most beneficial surgery to prevent problems associated with spina bifida.
When the Switzers first learned Sarah had spina bifida, their world was shattered, along with Bob and Judy Switzer, Sarah’s paternal grandparents.
Several decades ago, Judy Switzer was a nurse at Johns Hopkins Hospital in Baltimore where she saw many babies with spina bifida.
“No one knew much about it 50 years ago,” she said. “Many babies with it went home and became infected and died.”
Her husband, Bob Switzer, said the news was “devastating” at first.
But now he and Judy, who moved to Madison to be near their only grandchild, are enjoying watching Sarah grow and take part in a variety of activities.
“She recently water skied for 16 miles without stopping,” said the proud grandfather. “Sarah knows what she can and can’t do.”
Trish Switzer had never heard of spina bifida until she became pregnant with Sarah.
“I was as healthy as you could be,” said Switzer, who was 35 when Sarah was born. “I did everything I was supposed to do (to have a healthy child). I took folic acid, ate healthy and exercised.”
Folic acid, a vitamin B supplement doctors recommend to reduce the risk of brain-related problems such as spina bifida/hydrocephalus (fluid on the brain), didn’t work in Switzer’s case.
But as president of the Spina Bifida Association of Alabama, Switzer is still a big advocate of folic acid which is used to make the extra blood needed during pregnancy and creates healthy cells.
“Folic acid is not a 100 percent guarantee to prevent birth defects,” said Switzer, who is trying to educate the public about the debilitating condition during October, Spina Bifida Awareness Month. “But we believe it reduces some of the problems that can occur during a pregnancy.”
Dr. Debra Williams with the Madison County Health Department agrees.
“Every woman of pregnancy age should be taking folic acid each day,” said Williams. “It can prevent neural tube defects such as spina bifida or any disease that is brain related.”
According to the Spina Bifida Association of America, the exact cause of spina bifida is not known, but genetics and environmental factors do play a part in causing the condition that affects one of every 1,000 newborns in the U.S.
While it was almost a certain death sentence 30 years ago, today 80 to 90 percent of infants born with spina bifida survive and live a normal life expectancy.
After moving from England where her husband, Michael, was stationed with the U.S. Army, to Madison in 2005, Switzer attempted to find support for the family as it maneuvered the difficult maze of disability.
One of the first people Switzer met was Bill Whatley of Huntsville, believed to be the oldest active person with spina bifida in the United States at age 78. Now retired, Whatley was head of Huntsville Aviation for three decades. He continues to be a local, state and national advocate for the condition which nearly claimed his life as a child.
The Switzers and Whatley have become close friends since meeting three years ago.
Whatley calls Sarah a “miracle child.”
He should know. He’s living proof miracles happen.
___
Information from: The Huntsville Times, http://www.al.com/hsvtimes/hsv.html
Copyright 2008 The Associated Press.
By YVONNE BETOWT
The Huntsville Times
HUNTSVILLE, Ala. (AP) — On a recent Brownie outing to earn a disability awareness badge, Trish Switzer let her troop choose from blindfolds, ear plugs, leg weights, wheelchairs and walkers so they could be “disabled” during a scavenger hunt.
“After all the girls made their choices, (her daughter) Sarah said: ‘I want a disability,'” said Switzer with a laugh.
Sarah, 9, was born with spina bifida and walks with the help of braces on the lower parts of her legs. But she doesn’t accept the fact she is disabled.
Spina bifida is an opening in the spinal cord that causes full or partial paralysis, nervous system complications, bladder and bowel control problems, learning disabilities, depression and other issues.
The condition affects 70,000 Americans and was once considered a death sentence. But many, like Sarah, are leading near-normal lives.
Today, a pink Barbie wheelchair helps Sarah go long distances. She also is constantly accompanied by her Canine Companion dog, Bakari.
The Heritage Elementary School third-grader also enjoys water skiing, bowling and horseback riding.
After learning about Sarah’s birth defect, the Switzers had little time to mourn. That day they were told about an experimental fetal surgery in which doctors take the baby from the womb, perform the operation to close the opening in the spine, and return the baby to the womb so it can continue developing.
The surgeries took place on July 1, 1999, at Vanderbilt in Nashville. Sarah was born again on Aug. 22.
Trish and Sarah were featured in Life magazine because of the risky pioneering procedure.
Today, the surgery is still performed, both before and after birth, but the verdict is still out on which provides the best results. A study is under way by the National Institute of Child Heath and Human Development to determine the most beneficial surgery to prevent problems associated with spina bifida.
When the Switzers first learned Sarah had spina bifida, their world was shattered, along with Bob and Judy Switzer, Sarah’s paternal grandparents.
Several decades ago, Judy Switzer was a nurse at Johns Hopkins Hospital in Baltimore where she saw many babies with spina bifida.
“No one knew much about it 50 years ago,” she said. “Many babies with it went home and became infected and died.”
Her husband, Bob Switzer, said the news was “devastating” at first.
But now he and Judy, who moved to Madison to be near their only grandchild, are enjoying watching Sarah grow and take part in a variety of activities.
“She recently water skied for 16 miles without stopping,” said the proud grandfather. “Sarah knows what she can and can’t do.”
Trish Switzer had never heard of spina bifida until she became pregnant with Sarah.
“I was as healthy as you could be,” said Switzer, who was 35 when Sarah was born. “I did everything I was supposed to do (to have a healthy child). I took folic acid, ate healthy and exercised.”
Folic acid, a vitamin B supplement doctors recommend to reduce the risk of brain-related problems such as spina bifida/hydrocephalus (fluid on the brain), didn’t work in Switzer’s case.
But as president of the Spina Bifida Association of Alabama, Switzer is still a big advocate of folic acid which is used to make the extra blood needed during pregnancy and creates healthy cells.
“Folic acid is not a 100 percent guarantee to prevent birth defects,” said Switzer, who is trying to educate the public about the debilitating condition during October, Spina Bifida Awareness Month. “But we believe it reduces some of the problems that can occur during a pregnancy.”
Dr. Debra Williams with the Madison County Health Department agrees.
“Every woman of pregnancy age should be taking folic acid each day,” said Williams. “It can prevent neural tube defects such as spina bifida or any disease that is brain related.”
According to the Spina Bifida Association of America, the exact cause of spina bifida is not known, but genetics and environmental factors do play a part in causing the condition that affects one of every 1,000 newborns in the U.S.
While it was almost a certain death sentence 30 years ago, today 80 to 90 percent of infants born with spina bifida survive and live a normal life expectancy.
After moving from England where her husband, Michael, was stationed with the U.S. Army, to Madison in 2005, Switzer attempted to find support for the family as it maneuvered the difficult maze of disability.
One of the first people Switzer met was Bill Whatley of Huntsville, believed to be the oldest active person with spina bifida in the United States at age 78. Now retired, Whatley was head of Huntsville Aviation for three decades. He continues to be a local, state and national advocate for the condition which nearly claimed his life as a child.
The Switzers and Whatley have become close friends since meeting three years ago.
Whatley calls Sarah a “miracle child.”
He should know. He’s living proof miracles happen.
___
Information from: The Huntsville Times, http://www.al.com/hsvtimes/hsv.html
Copyright 2008 The Associated Press.
