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FW: Wired News : Hope for Spina Bifida Babies From: Jeffrey W. Clemens (clemens@duq.edu) Tue Mar 28 14:28:31 2000 Messages sorted by: [ date ][ thread ][ subject ][ author ] Next message: chris stanley: "2nd trimester losses" Previous message: Laureano Folgar Erades: "Re: Stein Leventhal s." FYI Spina bifida and open fetal surgery. Jeff -- Jeffrey W. Clemens, Ph.D. Assistant Professor, Biological Sciences Duquesne University Pittsburgh, PA 15282 412-396-4597 fax-5907 http://www.home.cc.duq.edu/~clemens/ ---------- >... > Subject: Wired News : Hope for Spina Bifida Babies > From Wired News, available online at: > http://www.wired.com/news/print/0,1294,34811,00.html > > Hope for Spina Bifida Babies > by Lynn Burke > 3:00 a.m. Mar. 28, 2000 PST > Joyce Garcia cried when she heard her unborn son had spina bifida. > When her doctor told her she could either abort the pregnancy or give > birth to a permanently disabled baby, she cried even harder. > But later that day her husband found something on the Internet that > would dramatically alter the course of their lives. ... > It was a website for open fetal surgery, a controversial procedure > that is only performed by a handful of doctors and exactly three > hospitals in the world. > Even after the Garcias met with the doctors behind the website, who > explained that they would make an incision in Joyce's stomach, remove > her uterus and place it on her torso, and then operate on the tiny > lesion that had formed on her unborn baby's spine, the couple was > still interested. > And so, in a matter of weeks, Joyce Garcia became the third pregnant > woman in the world to have the delicate, risky procedure performed. > Experts are hesitant to call it an Internet success story, even though > baby Nicholas is now an active toddler who shows signs of developing > far better than most spina bifida babies. > Dr. Leslie Sutton, who performs open fetal surgery as chief of > neurosurgery at Children's Hospital of Philadelphia, said information > on the Internet might mislead parents about what is ultimately a > complicated and unproven procedure. > "The Internet is totally unpoliced, and is often used more as a > marketing tool for doctors and hospitals than a pure scientific > source," Sutton said, adding that the "we perform miracles" tone of > some sites is inappropriate. > "We as scientists have to be appropriately skeptical. We have to not > be so wildly enthusiastic as to not look at this in a scientific > fashion," he said. > One out of every 1,000 newborns in the United States -- about 2,000 > infants annually -- is afflicted with the disabling birth defect each > year, according to the Spina Bifida Association of America. > The neurological condition occurs when a fetus' spine doesn't develop > properly and leaves the spinal cord exposed and vulnerable to injury > in the womb. > If a lesion forms on the cord, fluid leaks out through the opening and > is unable to circulate properly in the fetus' brain, resulting in > hydrocephalus, which may cause brain damage. Many spina bifida babies > suffer varying degrees of paralysis, learning disabilities, and > impaired bowel control. > The surgery, introduced for non-fatal conditions in 1997, does not > have wide acceptance in the medical community, and doesn't even > mention the treatment option on its website. > Sutton, although optimistic about the procedure, says patients should > be informed about the fetal surgery option by their doctors, not by > websites. > But when Maryann Dotegowski, 41, found out that she was carrying a > spina bifida baby, she said she was only presented by doctors with the > abort-or-proceed option. > Like the Garcia family and many others, she found out about a third > option on a website. A few weeks later, Dotegowski flew from her home > in Deptford, New Jersey to Vanderbilt University Medical Center in > Nashville, Tennessee, and had the operation. Two months later, she > delivered Emily Grace. > The baby, now 16 months old, is doing well. "She [just] took > her first step," her mother said. "It was with help, but it was her > first step." > Dotegowski believes her daughter would have been paralyzed from the > waist down without the surgery. > Critics of the procedure say it's way too soon to tell whether Emily > Dotegowski and Nicolas Garcia and the estimated 100 other open fetal > surgery babies are any better off from the procedure. > Joe Leigh Simpson, an obstetrician with the Department of Obstetrics > and Gynecology at Baylor College of Medicine in Houston, said > open-fetal surgery is risky, and often leads to pregnancy > complications including premature births. > He wrote an editorial in the Journal of the American Medical > Association warning against unabashed enthusiasm for the procedure. > "For in utero myelomeninggocele [spina bifida] repair to > become widely recommended, clear demonstration of greater success in > fetal outcome and fewer obstetrical complications are necessary," he > wrote. "This could well happen, but until then the surgery remains > unproved." > But Joseph Bruner, the director of fetal diagnosis and therapy at > Vanderbilt who owns and operates a website called fetalsurgeons.com, > counters that as long as doctors are remaining tight-lipped with their > patients, the Internet is the perfect place to disseminate information > about the procedure. > "We're basically serving a huge catchment area, the entire country. > The only way to communicate with these patients is on the Internet," > he said. "Our work is about increasing options for women who are faced > with terrible news. > "Within the medical community there are skeptics, as there are with > all new procedures," Bruner added. > And although hard proof of the treatment's efficacy is probably > several years down the road, preliminary research from Children's > Hospital of Philadelphia and the University of Pennsylvania showed > that surgery performed on 10 fetuses with spina bifida lesions led to > a significant decrease in hindbrain herniation, the leading cause of > death in spina bifida babies. For Joyce Garcia and parents like her, the miracle of their babies' > birth is proof enough. She says Nicholas, now 28 months old, is not cured, but is better than > he would have been without the surgery. "He's doing very well, he's walking, he's running, he's talking like a > parrot, repeating everything he hears," Garcia said. To help spread the word to other parents who are faced with the birth > defect, she and her husband have set up their own website, flush with > photographs of their beaming baby. "The pictures show we're a normal family, that we're happy and > everything is normal," Garcia said. > > Copyright 1994-2000 Wired Digital Inc. All rights reserved. Next message: chris stanley: "2nd trimester losses" Previous message: Laureano Folgar Erades: "Re: Stein Leventhal s."

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