Saving Lives Not yet Begun

updated 06/18/1990 AT 01:00 AM EDT

originally published 06/18/1990 AT 01:00 AM EDT

Dr. Michael Harrison will never forget the agonizing moment he faced seven years ago in the operating room. Having opened the uterus of a Florida woman, exposed the tiny fetus whose lethal birth defect he hoped to repair and made an incision in the unborn baby's side, Harrison saw he could go no further. Each time he attempted to get past the liver into the chest, the fetus's heart would stop. "We failed miserably," he says. "It broke my heart."

That first failure was followed by five more in as many years, but Harrison wouldn't give up. Last August, the birth of Blake Schultz (the beaming infant at right) vindicated Harrison. Now a 10-month-old gurgling lapful, Blake is the first baby to benefit from Harrison's revolutionary fetal surgery to repair a birth defect known as a diaphragmatic hernia. Nine months after operating on Blake and his mother, Harrison repeated the procedure on Lora Scott and her unborn daughter, Devona, who became his second success on April 17. Harrison's procedure was the first ever done within the fetus itself. He and his surgical team at the University of California at San Francisco have labored 12 years to make the unprecedented operation possible. "We are in a new era where fetal surgery is a real safe thing to perform in certain cases," says Medical College of Virginia plastic surgeon Dr. I. Kelman Cohen. "It is a field that will expand immensely in the next 20 years."

Without Harrison's intervention, Blake and Devona would almost surely have died at birth. As fetuses, they had developed holes in their diaphragms, the inner wall of muscle dividing the chest from the abdomen. The defect, which occurs in about one of every 2,200 births, allows the stomach and intestines to move upward into the chest, stunting growth of the lungs. Newborns with the condition cannot breathe, and only 25 percent can be saved by surgery afterbirth. 'The kids are born looking normal," says Harrison, "and they almost all die."

As a resident in pediatric surgery at Boston's Massachusetts General Hospital, Harrison, who graduated magna cum laude from Harvard Medical School in 1969, was frustrated by the low rate of surgical success and became convinced that a prenatal operation could work. Some colleagues doubted such an operation was possible. "They thought it was the stupidest thing they'd ever heard," says Harrison, but in 1978 he assembled a team in San Francisco and began researching the surgery. Experimenting first on baby lambs and later on fetal monkeys, Harrison showed that the defect could be repaired without harming the mother or affecting her chances of bearing another child. Harrison passed a milestone in 1986, when he removed a 23-week-old fetus from its mother's uterus, operated to alleviate a blocked urethra, then returned the baby to the womb. The child, who would otherwise have died in the womb, was born healthy. Harrison's failures with the more daring diaphragmatic hernia operation pained but did not discourage him. In two babies who died shortly after birth because of other complications, the lungs had developed normally. "I could tell we were going to win," he says. "A lot of others didn't feel that way. It was discouraging sometimes. It was pretty hard to explain, 'Well, we just killed six babies.' It was tremendous pressure."

Rick and Beth Schultz came to Harrison when there was now here else to turn. Rick, 31, a welder for a wire manufacturer in Chelsea, Mich., and Beth, 28, a data processing coordinator, already had a son, Ryan, now 5, when they learned in January 1989 that Beth was pregnant. An ultrasound taken at 16 weeks showed no problems, says Beth. "Then I went back a month later. They couldn't see part of the baby's stomach, so they sent me to another lab with better equipment. After they did the ultrasound this time, they didn't say a word to me. They just told me to call my doctor." Beth's obstetrician explained that her baby appeared to have a diaphragmatic hernia. "What stood out in my mind was that the baby wouldn't be able to breathe," recalls Beth. "I started to cry."

After a third ultrasound exam by a specialist in Detroit, the Schultzes were told they had three options: End the pregnancy, attempt surgery after birth or try the experimental prenatal operation. After talking to Harrison on the phone and learning of the risks, they opted for the surgery. On June 12 the Schultzes flew to San Francisco, aided by the March of Dimes, which had arranged for Continental Airlines to fly the couple free because they could not afford the $1,400 fare. At the hospital, Beth learned she would have to stay in bed until delivery, as well as endure the side effects of various medications. "I was leaning toward not doing it," says Rick. But after phone calls to Beth's mother and best friend, he says, "She looked at me, and I looked at her, and we said, 'Heck, this is the last chance for him.' So we decided to go for it."

With Beth and her 24-week-old unborn son both under anesthesia, Harrison made an incision similar to a cesarean section to reach the uterus. Then he opened the uterus, drained the amniotic fluid and exposed the fetus's left arm and side. Attaching monitors to check the fetal heart rate and pulse, Harrison cut into the fetus's abdomen. After moving the stomach and intestines back into the abdominal cavity, he stitched a patch of synthetic Gore-Tex fabric over the hole in the diaphragm. A second patch was placed on the outside of the abdomen to relieve any pressure on the developing organs, and the fetus was returned to the womb. "It went just like it should. It's like rowing a boat," says Harrison, who captained the Yale University crew as an undergraduate. "You just know when it's right."

To minimize the postsurgery danger of a miscarriage, Beth spent the next six weeks at home in bed, watching television while taking drugs to suppress contractions. Then, on Aug. 4, she was rushed to the University of Michigan Hospital with labor pains. The next morning, Blake was delivered by cesarean section through the same incision made for the surgery. He remained in the hospital for four months, undergoing six more hours of surgery—first to correct a stomach reflux problem that caused him to throw up, then to remove the scar tissue. (The patch on Blake's diaphragm will remain for life.) Blake has since weathered a four-day bout with pneumonia, but otherwise, says Beth, "he's as happy as he can be."

Stephen Anderson, 36, and Lora Scott, 26, faced the same agonizing decision as the Schultzes when their baby's diaphragmatic hernia was discovered by ultrasound 16 weeks into Lora's pregnancy. Lora, a data entry clerk, and Stephen, a credit supervisor for a jewelry store chain, had planned to live together a year before getting married and starting a family—Lora had two daughters from a previous marriage—but both agreed they didn't want an abortion. Says Lora: "I wouldn't judge others who make that decision, but she was already moving around inside of me. We even watched her move her hand on the ultrasound. She was our baby." Six weeks after Harrison operated on Lora and her baby, Devona was born eight weeks prematurely.

Like the Schultzes, Stephen and Lora are full of gratitude toward Harrison. "He did so much for us," says Lora. Though the surgeon is pleased that his patience and optimism have been vindicated, Harrison reserves a special share of his own gratitude for the parents of those babies he was unable to save. "The biggest antidote to getting discouraged was the families," he says. "They were all heroic. All were women who could say, 'Look, you've told us what the chances are, and we've decided against terminating the pregnancy. We're willing to take the risk.' " That willingness has saved the lives of two children and meant new hope for countless unborn children to come.

—Montgomery Brower, Maria Eftimiades in New Haven, Nick Gallo in Tacoma, Julie Greenwalt in Chelsea, Mich., Dianna Waggoner in San Francisco

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