An experimental – and controversial – procedure for treating a crippling birth defect in the womb offered Trish and Mike Switzer the only chance that their daughter would walk like other children. But the fetal surgery posed a fatal dilemma: Their baby could die before she was born.

LIFE MAGAZINE, December, 1999

BORN TWICE

By Skip Hollandsworth
Photography by Max Aguilera-Hellweg [see picture at bottom]

"It's a girl," said the technician operating the ultrasound machine, pointing at a computer screen that showed a tiny fetus wiggling inside the uterus of Trish Switzer.

"A girl?" said Trish, squeezing the hand of her husband, Army Maj. Mike Switzer. It was May 21, 1999, and Trish, expecting her first child at 34, was on an examining table at a prenatal clinic in Richmond undergoing the standard sonogram given to women around the 18th week of pregnancy. "A little girl?' Trish asked again.

A minute passed as the technician kept studying the screen. Then another minute. Then several more. "Let me get the doctor," said the technician softly, heading for the door.

What happened next was the nightmare dreaded by every couple expecting a child. A doctor walked into the room and said, "There are some problems." The sonogram showed that the spine had not developed properly, leaving a small lesion on the lower half of the spinal cord. Because of the defect, fluid could not circulate properly in the fetus's brain, resulting in a condition called hydrocephalus, a leading cause of brain damage. Already, the cerebellum, in the back part of the brain, had been squeezed down toward the neck. "No one can predict the outcome," the doctor said, "but your child could be incontinent, paralyzed, perhaps even mentally retarded." He paused. "I need to let you know that you have the option of genetic termination? ABORTION!

"Genetic termination?" asked Trish, trying to keep her voice in control.

"Yes. Terminating the pregnancy."

It is a scene played out thousands of times a year: young couples, hoping to share their love for each other with a child, suddenly faced with a shattering new reality. The Switzers' unborn daughter was afflicted with spina bifida, one of the most crippling of birth defects, which affects about 2,000 newborns a year in this country. (Estimates are that at least another 2,000 fetuses diagnosed with spina bifida are aborted every year.) Typically, spina bifida babies receive surgery within 48 hours after birth to close the opening on the spinal cord. But by then, most of the damage has been done. Although some spina bifida babies with lesser lesions can grow up to live relatively normal lives -- walking with braces, controlling their bowels and going to regular schools -- many are confined to wheelchairs, suffer from learning problems and must endure several operations during their lifetime to have shunts placed inside their brain to drain the excess spinal fluid that causes hydrocephalus.

"I suppose, like all new parents, we had imagined ourselves having the perfect child," says Trish, who met Mike in 1996 at the Patuxent River Naval Air Station in Maryland. A civilian with bachelor's and master's degrees in engineering, Trish was at Patuxent training as a flight-test engineer. Mike, 35, a broad-shouldered West Point graduate, was there training to become a test pilot for experimental military aircraft. Mike had even submitted his application to NASA to become an astronaut. "We kept saying, 'How did this happen to us?'" he recalls. "We were military types. We planned for everything. And then came this one act of, well, randomness."

After looking at the image of the fetus in the sonogram -- "this little helpless girl with a little tear in her back," says Mike -- they decided they could not go through with an abortion. They gave her a name: Sarah Marie Switzer. But they were unsure what to do next. "When I was alone, I'd whisper to her, 'Come on, Sarah Marie, you can get better,'" says Trish. "Then I'd throw myself down on the bed and sob myself to sleep."

A few days after the diagnosis, Trish's mother called to say she had found a Web site set up by the Vanderbilt University Medical Center in Nashville. Two doctors there had been attempting a daring new surgery, operating on spina bifida fetuses three to four months before the normal delivery date and sewing up the lesions while the fetuses were still in their mothers' wombs. Although it will take years of further research before they can have conclusive results, Dr. Joseph Bruner, 46, an assistant professor of obstetrics and gynecology, and Dr. Noel Tulipan, 48, a quiet, well-regarded pediatric neurosurgeon, were claiming that the operations -- at that point there had been fewer than 50 -- seemed to prevent at least some of the damaging consequences of the defect. Some of the babies didn't develop the kind of hydrocephalus that required shunts; others had more feeling in their legs than doctors originally expected; still others had no bowel problems.

The jubilant Switzers immediately E-mailed Bruner to discuss going to Nashville. But as the couple was about to discover, the surgery did not come without significant risks. In fact, the Switzers were about to embark on a journey that would test their faith not only in modern medicine but also in themselves. As Bruner gently told the Switzers in their first face- to-face meeting in June: "If you do not do the surgery, your baby will be born alive and could well well live a productive life. But if you go into contractions during surgery and deliver the baby prematurely -- and there's a chance you will -- your baby could have some very serious problems and perhaps die. This is the dilemma for you: Whether the chance at a better lifestyle for your daughter is worth the risk of her death."

When Bruner came to Vanderbilt in 1990, he was relatively unknown in the circles of academic medicine. After receiving his M.D. from the University of Nebraska, he had worked as an Army doctor at several military bases, where he specialized in analyzing sonograms of fetuses with birth defects "mainly because there was no one else around to do it."

At Vanderbilt, Bruner spent much of his time working on the more difficult deliveries. One afternoon in 1992, in a hospital hallway, he met Tulipan, who had trained at Johns Hopkins University and had treated many spina bifida patients since coming to the medical center in 1985. Tulipan believed that if a spina bifida lesion could be repaired before birth, then at least the spinal cord would be protected from further nerve damage whenever the fetus bounced against the uterine wall. "The idea," Tulipan recalls, "was that we could prevent enough of the secondary injuries, so that more spina bifida children would have a chance to walk." The ambitious Bruner, who had been looking for an opportunity to try his hand at fetal surgery, suggested the two of them start working together.

For two years, the doctors stayed at the medical center late into the night, operating on the fetuses of pregnant sheep. In 1994 they received approval from the hospital's review board to operate on human fetuses endoscopically, inserting tiny surgical instruments, along with a miniature camera and light source, through the uterine wall. They tried four such operations, but because of technical limitations -- it was difficult to see through the souplike amniotic fluid in the uterus -- the results were disastrous. Two fetuses died and two were delivered prematurely.

Undeterred, Bruner and Tulipan returned to the review board in 1997 with another proposal. This time they would remove the uterus through a cesarean incision, place it on the mother's abdomen, then cut it open and remove the amniotic fluid so they could work directly on the fetus and repair the lesion. When finished, the doctors would replace the amniotic fluid, sew up the uterus, put it back in the mother's belly and let the pregnancy continue.

As word about the new procedure spread, Bruner and Tulipan found themselves attacked by some who thought they were playing God. One man with spina bifida, who walks with the aid of braces and is engaged to a woman with spina bifida, wrote to the Vanderbilt Web site: "I wouldn't have wanted my mother to risk my life in an effort to make me 'perfect.' My life has been and continues to be VERY rewarding."

The more common response came from parents-to-be who were willing to do almost anything to keep their children from a crippling disability. Trish and Mike Switzer traveled to Nashville in June, even after learning that their insurance company would not commit to cover the $30,000 cost of the operation and hospital stay because fetal surgery was considered experimental. Nor would the insurance company agree to pay any medical costs that might arise as a result of the surgery. "We'll go into debt," Switzer