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
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