Hi Ken,

         Yes, it is - isn't it a miracle!! I love that picture!

                                Trisha

> this is the surgery that  matches the photo you sent to me with the baby
> reaching out and grabbing the doctor's finger isn't it? i still look at
that
> picture every once in a while.
>
> -----Original Message-----
> From: Trisha Cummings [mailto:[log in to unmask]]
> Sent: Wednesday, April 12, 2000 7:15 AM
> To: [log in to unmask]
> Subject: Washington Post article - Fetal surgery for Spina Bifida
>
>
> Over the Tiniest Patients, Big Ethical Questions=20
> By Susan Okie
> Washington Post Staff Writer
> Wednesday, April 12, 2000; Page A01=20
>
>
> PHILADELPHIA -- When Giovanna Capuano learned, halfway through =
> pregnancy, that her baby would likely be paralyzed below the waist by a =
> serious birth defect, she agonized over what to do. In the end, she made =
> a choice that would have been unthinkable until recently: letting =
> surgeons operate on her daughter in her womb.=20
>
> But a moment came, during the drive from New Jersey to Philadelphia, =
> when Capuano realized what she was facing: first the risky operation, =
> then weeks of treatment in a strange city, then the delivery of a =
> premature and possibly very sick infant. She nearly turned back.
>
> "We're riding down Route 55. I'm in tears," Capuano recalled. "I told my =
> husband, 'We'll just skip the surgery. . . .' I was petrified, not so =
> much for myself but for the baby, and for my son at home."
>
> Capuano's unborn daughter had spina bifida, a relatively common birth =
> defect that can cause paralysis and impair brain development. In the =
> last three years, pregnant women have been traveling to two U.S. =
> hospitals, Children's Hospital of Philadelphia (CHOP) and Vanderbilt =
> University Medical Center in Nashville, where surgeons have begun =
> operating before birth on such fetuses, hoping to forestall damage =
> during pregnancy to the brain and nervous system.
>
> As many as five other hospitals around the country are reportedly =
> considering whether to offer such surgery, which costs about $35,000. =
> And some insurers have agreed to cover the operation, including Aetna =
> U.S. Healthcare, the nation's largest health insurer.
>
> The new treatment represents a profound ethical shift for doctors in the =
> young, high-stakes field of fetal surgery, who until now have operated =
> only to correct defects that would otherwise kill infants at birth or =
> before. With spina bifida, surgeons are treating fetuses whose defect =
> isn't fatal--only disabling--and who otherwise could undergo corrective =
> surgery after they are born. The goal is not to save a life, but to =
> enhance it.
>
> As advances in technology and knowledge extend the reach of medicine to =
> areas once considered sacrosanct--the fetus inside the womb, the genes =
> inside a cell--doctors and patients increasingly face complex ethical =
> questions such as those raised by fetal spina bifida surgery.
>
> While Capuano and her daughter came through the surgery well, surgeons =
> acknowledge it's too soon to know whether the approximately 100 American =
> children who have undergone the operation will be healthier or smarter, =
> in the long run, than those treated after birth. That's a question that =
> can be answered only by comparing both alternatives--a study that has =
> yet to be done.
>
> Nevertheless, Vanderbilt, which has operated on more than 80 fetuses =
> with the condition, aggressively promotes the surgery, including =
> statements on its Web site that the hospital no longer considers the =
> surgery experimental and that many parents decide to abort a fetus with =
> spina bifida only because they "don't yet know that there is a possible =
> treatment." Such marketing tactics have raised alarm in some quarters.
>
> "We're still skeptical that it is the right thing to do," said Michael =
> R. Harrison, a surgeon at the University of California at San Francisco =
> (UCSF) who, in the last two decades, has pioneered fetal operations for =
> lethal birth defects. Harrison said he is "scared to death" at the =
> prospect of hospitals rushing to offer a perilous treatment whose =
> long-term value is uncertain.
>
> Spina bifida surgery may be only the beginning. Doctors envision taking =
> advantage of the "fetal environment" to operate on other nonlethal =
> conditions. Facial deformities might be corrected before the skin =
> develops the ability to scar. Blood disorders such as sickle cell anemia =
> might be treated with a fetal bone marrow transplant before the immune =
> system becomes able to reject foreign cells.
>
> Yet such surgery poses serious hazards to mother and fetus. Women can =
> experience bleeding, infection and sometimes life-threatening side =
> effects from drugs to control premature labor. They must have all future =
> children by Caesarean section. And virtually all infants who have fetal =
> surgery are born prematurely, increasing their chances of complications =
> as newborns.
>
> "This is a real jump for us, to go from a baby who's . . . guaranteed to =
> die" without fetal surgery to one who doesn't need it to survive, said =
> Lori Howell, coordinator of CHOP's fetal surgery program.
>
> Weighing the Odds
>
> Capuano's child was one of about 2,000 infants born with spina bifida in =
> the United States each year. The condition, which occurs in about 1 of =
> every 2,000 births, is largely preventable if pregnant women get =
> adequate amounts of folic acid, a vitamin. But in affected fetuses, the =
> spinal bones and skin fail to close completely over the spinal cord, =
> which then is progressively damaged during pregnancy. In addition, the =
> back of the brain slips downward into the spinal canal (called hindbrain =
> herniation), blocking spinal fluid flow.
>
> Children with spina bifida often have foot or leg paralysis and little =
> control over their bowels and bladder. They may also have learning =
> problems and hydrocephalus, a buildup of fluid that requires surgical =
> placement of a drainage tube in the brain.
>
> Only 10 percent of pregnant women evaluated for all types of fetal =
> surgery are offered an operation at CHOP. The others are told either =
> that their infant can be treated after birth or that the problem is too =
> complex or advanced to fix. About half of patients who are offered fetal =
> spina bifida surgery accept it, surgeon N. Scott Adzick said.
>
> Ultrasound showed that Capuano's fetus had good leg movement--a sign =
> that her spinal cord was still working--but she already had signs of =
> early hydrocephalus. At the end of a marathon day of tests and =
> counseling, Adzick told Capuano the defect had been caught early =
> enough--before 25 weeks of pregnancy, when studies suggest spinal cord =
> damage begins--to make her a good candidate.
>
> The Capuanos had two other choices--an abortion or surgery after birth. =
> At least 2,000 women in the United States have abortions each year after =
> learning they are carrying a fetus with spina bifida.
>
> Capuano said she couldn't imagine refusing. "I don't know exactly where =
> I stand on the pro-life, pro-choice thing, but at five months pregnant, =
> they tell you to terminate? As far as I'm concerned, that's not a =
> choice."
>
> Whether patients agree to fetal surgery depends on individual beliefs =
> and emotions, but also on how the options are presented. "How much . . . =
> is heard is always a question. . . . You're talking into a lot of hope," =
> said Albert R. Jonsen, an emeritus professor of medical ethics who =
> worked with UCSF's fetal surgery program during the 1980s.
>
> At Vanderbilt, which built its fetal surgery program exclusively upon =
> spina bifida, the acceptance rate is 95 percent--a figure many ethicists =
> find disturbingly high. (At UCSF, in contrast, Jonsen said a 1998 =
> analysis showed that 55 percent of patients accept fetal surgery for =
> lethal defects.)
>
> Vanderbilt obstetrician Joseph P. Bruner believes that his hospital's =
> acceptance rate is high because families who make the trip to Nashville =
> are determined to continue their pregnancies. "They make a lot of =
> decisions ahead of time," he said.
>
> Unexpected Bonus
>
> When Vanderbilt's Bruner and neurosurgeon Noel Tulipan became the first =
> to attempt fetal surgery for spina bifida, the initial results were =
> disastrous. Between 1994 and 1997, two fetuses were lost because of =
> premature labor, and the two surviving infants did not benefit. So in =
> 1997, the doctors abandoned operating through a viewing instrument and =
> performed the first "open" fetal spina bifida repair, cutting into the =
> mother's uterus and covering the fetus's exposed spinal cord. Despite =
> some serious complications among the early cases--including one fetal =
> death from infection--the Vanderbilt team now has the largest number of =
> fetal spina bifida cases of any U.S. hospital.
>
> Surgeons at CHOP, who also operate on lethal defects, began doing spina =
> bifida surgery in 1998. In recent months, it has become the most =
> frequent birth defect seen at the fetal surgery center. One of the first =
> 10 fetuses to undergo the operation was delivered 15 weeks prematurely =
> and died.
>
> Both teams have found that fixing the spinal defect appears to correct =
> hindbrain herniation. After surgery, the brain moves back up into its =
> proper position. In contrast, hindbrain herniation isn't corrected by =
> surgery after birth. That improvement was an unexpected bonus, because =
> up to 15 percent of children with spina bifida die from breathing =
> problems associated with the brain abnormality. "Hopefully, we're =
> preventing much of that," Bruner said.
>
> A Bouncing Baby Girl
>
> The morning after she arrived in Philadelphia, Capuano was wheeled into =
> surgery. The operating room was stifling--it's kept warm to avoid =
> dangerously cooling the fetus--and full of people. There were four =
> pediatric surgeons, an obstetrician, a pediatric cardiologist, four =
> anesthesiologists and four nurses. The unborn patient was the size of =
> chief surgeon Adzick's hand.
>
> Wearing magnifying glasses, the surgeons opened Capuano's uterus using a =
> special stapling device that controls bleeding. They repaired the =
> opening on the fetus's back, applying a patch made from human skin with =
> the cells removed and then sewing the fetus's skin over the defect. Then =
> they closed the uterus. The operation was over in an hour and 10 =
> minutes.
>
> Capuano spent the next three months in housing near CHOP. She stayed in =
> bed except for twice-weekly visits to the hospital, and she wore a pump =
> that continuously injected a drug to control premature labor. Four weeks =
> before her due date, her daughter, Mia Lisa, was delivered by Caesarean =
> section.
>
> Now 9 months old, Mia Capuano is a rosy, round-faced baby with green =
> eyes and red hair who babbles, grabs toys and "scoots" around rooms on =
> her bottom like other infants her age. Doctors don't know yet how well =
> she'll walk, but the signs look promising.
>
> "She bends her toes, flexes her feet," said Capuano. "She's right on =
> target--maybe a little behind on gross motor [development], . . . but =
> considering what she's been through, that's good." Her mental =
> development seems to be on track as well. "She says, 'Mama,' 'Dada' and =
> 'Pop-pop,' " noted Capuano. "Her mind is excellent."
>
> Adzick calls the child's progress "spectacular"--and believes it is =
> better than it would have been if doctors had waited to operate. But =
> both he and Bruner acknowledge researchers won't be able to fully =
> evaluate brain development and intelligence until children who've had =
> the operation are about 5 years old.
>
> So far, "there is no compelling evidence" that the treatment improves =
> leg function or bowel and bladder control, Bruner said. On the other =
> hand, it does seem to reduce the need for surgical placement of shunts =
> to drain fluid from children's brains.
>
> The clearest assessment would come from a study that randomly assigned =
> infants to surgery either before birth or after. Doctors, patients' =
> groups and ethicists will discuss such a study at the National =
> Institutes of Health this July. But Bruner said many families are so =
> eager for fetal surgery that they would resist waiting until after =
> birth. "I'm not even sure that a study can be done in this country," he =
> said.
>
> Spina bifida costs an estimated $489 million per year in the United =
> States. Doctors don't yet know whether fetal surgery will save money. =
> But Aetna's chief medical officer, Arthur Leibowitz, said his company =
> didn't decide to cover the treatment for economic reasons.
>
> "This was the right thing to do," said Leibowitz, a pediatrician. "The =
> jury is still out about how much ongoing medical care these patients =
> will need, but clearly they're going to need a lot of medical care if =
> they don't have this procedure right away."
>
> FIXING SPINA BIFIDA IN THE WOMB
>
> The condition
>
> In the first month of pregnancy, bones of the spine close into a tube =
> around the spinal cord, much as a zipper closes. Spina bifida occurs =
> when the developing spine doesn't "zip" all the way down, leaving part =
> of the spinal cord exposed and vulnerable to damage. The defect can also =
> cause the rear of the brain to shift downward, cutting off the normal =
> flow of fluid.
>
> Fetal surgery
>
> Surgeons have begun to correct spina bifida before birth, trying to =
> prevent damage to the spinal cord and brain.
>
> 1. An incision is made in the uterus, exposing the baby's spinal defect.
>
> 2. The area overlying the exposed spinal cord is cleared of damaged =
> tissue.
>
> 3. A patch of protective tissue is sewn over the exposed section of =
> cord.
>
> 4. Fetal skin is sewn over the protective layer, and the uterus is =
> closed.
>
> Recovery
>
> Medical researchers were surprised to find that after fetal surgery for =
> spina bifida, the sagging portion of the brain returns to its normal =
> position.
>
> SOURCE: Children's Hospital of Philadelphia
>
>
> =A9 2000 The Washington Post Company=20