Baby Fae Loses Her Battle

By Claudia Wallis

The baboon heart fails, but a doctor defends the transplant

After 21 days of battling to preserve a fragile life, Dr. Leonard Bailey was visibly spent. His voice trembled and broke with emotion last Friday as he faced the press at Loma Linda University Medical Center in California to provide the epitaph for the dark-haired infant known as Baby Fae. "Today we grieve the loss of this patient's life," said the 41-year-old heart surgeon. That life, he insisted, had not been in vain. "Infants with heart disease yet to be born will some day soon have the opportunity to live, thanks to the courage of this infant and her parents. We are remarkably encouraged by what we have learned from Baby Fae." So ended an extraordinary experiment that had captured the attention of the world and made medical history. For three weeks the 5-lb. infant had survived with the heart of a baboon--more than two weeks longer than any previous recipient of an animal heart.

Her brief life was marked by more than its share of controversy. Doctors challenged the wisdom of using an animal heart when a human organ might have been preferable; animal lovers protested the sacrifice of a healthy monkey for what they saw as medical sensationalism; and others questioned the circumstances under which Fae's parents had consented to so drastic a procedure. Nonetheless, Fae's struggle for survival converted many skeptics and won the hearts of millions of people. Her progress and setbacks--virtually every beat of her simian heart--were avidly followed. Hundreds of Americans sent cards, flowers, even money to the infant as gestures of support and sympathy.

Though no one expected Fae's survival to be easy, her death last Thursday night came as a surprise. The child, who was born with a fatal defect called hypoplastic left heart, had received the heart of a seven-month-old female baboon on Oct. 26 and made steady progress for the next two weeks. In a touching videotape made just four days after surgery, Baby Fae was seen yawning and stretching, seemingly a normal infant in every respect. By the second week she was no longer dependent on a supplementary oxygen supply or intravenous feeding.

According to her doctors, problems did not arise until the 14th day after surgery, when a battery of tests revealed that the infant's body was beginning to reject the alien heart. Over the next five days, doctors increased her dosages of the antirejection drugs, supplemented her weakening heart with digitalis, eased the strain on her breathing with a respirator and resumed intravenous feeding. By Wednesday of last week Surgeon David Hinshaw told a packed auditorium of reporters at Loma Linda that "she is in the process of turning around. Signs of rejection are reversing right down the line. Baby Fae is holding her own."

As late as 7 p.m. Pacific time on Thursday, just two hours before she died, a hospital spokesman was reporting that the child was "hanging in there." In fact, Baby Fae was experiencing kidney failure. For several days, the child's urine output had been declining--an indication that the kidneys were not functioning properly. This put other organs in jeopardy and ultimately contributed to heart failure, Bailey explained at the press conference. It was not clear if Fae's kidney problem was due to her drug regimen, the surgery or rejection, which can trigger the failure of a number of organs. Most likely, it was a combination of factors. Though doctors had discussed the possibility of a second transplant--either from a human donor or another baboon--the child's weakened condition made this impossible. At 10:30 p.m. the hospital released a tersely worded death announcement: despite "intensive efforts" to restore her heart, "Baby Fae died at 9 p.m. Her parents were with her as much as possible during this period and are receiving support from chaplains and the physicians."

In response to questions last week, Bailey said that Baby Fae suffered little pain in her final hours. "I believe she suffered a great deal more before I saw her than after," he insisted. "The best days of her short life were after her transplant." The parents, he maintained, had no regrets about the experiment: "They felt that it was an enriching experience."

Despite the hospital's efforts to protect the identity of the parents, information about the mother, Teresa, 23, began to seep out last week. Baby Fae's unmarried parents are an impoverished couple who moved from Kansas to Barstow, Calif, 90 miles northeast of Los Angeles, about two years ago. According to an NBC report, both parents had brushes with the law in their home state: the mother for passing bad checks, the father for disorderly conduct. Though the couple had lived together for five years and had a 2 1/2-year-old son, the father -- deserted Teresa a week before the birth of Baby Fae. She then turned to a close friend, Henry Raedel, 28, who was with her when she entered Barstow's small hospital on Oct. 14. Less than three hours later Baby Fae was born. The child was three weeks premature and suffering from a seriously underdeveloped heart; her real name was said to be Stephanie Fae.

According to her hospital roommate, Teresa is a tall, thin, outgoing blond and a heavy smoker who worried about her daughter. The newborn was transferred to the Loma Linda medical center, a Seventh-day Adventist institution with an excellent reputation in pediatric cardiology. Doctors there explained to Teresa that the baby would probably die within a few days and that she could either leave her at the hospital or take her home. Raedel tearfully told the Los Angeles Times that after a sleepless vigil, "watching her to make sure she was breathing," they took the child home to die.

The hospital called Fae's mother within the next two days and, as Bailey explained, proposed the baboon heart transplant. A friend recalls that Teresa "decided she had to do anything possible to try and save her baby's life." Barstow residents who are close to the mother say that she was well aware of the experimental nature of the operation and was not pressured into agreeing to it.

Even so, many questions have been raised about the way in which consent was obtained. The hospital's refusal to release the text of the form signed by Fae's parents fueled the controversy. This document "is crucial," says Arthur Caplan, a medical ethicist at the Hastings Center in Hastings-on-Hudson, N.Y. "Were the parents informed about the possibility of a human heart?" Others felt that Bailey may have misrepresented the facts about the "Norwood procedure," a surgical treatment recently developed to help infants with hypoplastic heart. Indeed, in his public statements, Bailey understated the success rate of this alternative.

The medical world will be reflecting on the case of Baby Fae for a long time. While a number of physicians considered the experiment premature, most were impressed and surprised by the infant's record-setting survival. "This has been a success," says Dr. Donald Hill, chief of cardiovascular surgery at Pacific Presbyterian Medical Center in San Francisco. "They have demonstrated that there is a window early in life where the opportunity to make a successful transplant from a baboon to a human exists." But neither Hill nor other doctors foresaw any possibility of using simian hearts as a permanent solution to heart disease. "I think these transplants might be used to bide time until a human heart can be found," says Dr. Michael DeBakey, the pioneering Houston heart transplant surgeon.

Such stopgap measures are desperately needed. "There is a tremendous shortage of donor organs for infants," says Dr. Thomas Starzl, a leading liver transplant surgeon at Pittsburgh's Children's Hospital. He estimates that eleven out of twelve of his infant patients who are now waiting for liver transplants will die before suitable donors can be found. Baby Fae has already had one salutary effect. According to Barbara Schulman, coordinator for the Regional Organ Procurement Agency at UCLA, over the past three weeks the number of prospective infant donors referred to the agency has soared.

Bailey and his team believe that the lessons of Baby Fae will pave the way for future baboon heart transplants, and he is convinced that the next time "we will be able to diagnose rejection earlier." The surgeon was vague about when the next time might be. "I plan to attempt it again by-and-by," he told reporters. Fae's mother, he noted, had encouraged his efforts. "The last thing she said to me was to carry on and not to let it be wasted."

--By Claudia Wallis.

Reported by Jonathan Beaty/Barstow and Dan Goodgame/Loma Linda

With reporting by Jonathan Beaty, Dan Goodgame/Loma Linda