Heritage Snapshot: Part 73

Her story was beamed by shortwave radio around the world by the powerful Voice of America. It was telecast live, via satellite, into Australia. It was translated into Portuguese and was seen by 20 million people in Brazil. It prevailed over the 1984 United States presidential election. Unknown to her, Baby Fae waged a tug-of-war with our emotions—and she won. Baby Fae’s stretching and sucking, her yawning and blinking, brightened the nightly news for multiple millions of well-wishers. In just three weeks she was known and loved by more people than was any other baby in history. When she was shown listening to her mother’s voice over the phone, she reached out and touched everyone. With the transplanted heart of a baboon, she made medical history as the first newborn recipient of a cross-species heart transplant. Baby Fae raised the consciousness of the world regarding the shortage of organ donors and gave us a new appreciation for our own human worth. Her story stopped a woman from committing suicide and inspired a man to become an organ donor. Within 48 hours of deciding to be an organ donor, that man was killed in an accident and his heart was used in Connecticut’s first heart-transplant surgery. But Baby Fae’s story was clouded with controversy from the beginning. Her compassionate, publicity-shy surgeon was accused of staging a publicity stunt, of practicing grandstand medicine, even of child abuse. Some scientific experts praised him and others condemned him. A conflict developed between the public’s right to know and a patient’s right to privacy. Leonard L. Bailey, MD, had been studying heart transplantation since he was a junior medical student. In 1968 he entered a four-month surgery-research rotation as part of his medical education. His work in heart-transplant research began shortly after Dr. Christiaan Barnard performed the first successful human heart transplant in South Africa in December, 1967. Later, after a residency at the Hospital for Sick Children in Toronto (Canada), the largest children’s hospital in the world, Bailey specialized in pediatric cardiac surgery. He concentrated his attentions on congenital heart deformities in the very young, an ambitious pursuit that requires precise technical expertise. The surgeon had dedicated much of his career to finding a solution for a tragic birth defect. Hypoplastic left-heart syndrome (HLHS), a lethal underdevelopment of the left side of the heart, causes otherwise perfectly formed babies to die shortly after birth. At the time, HLHS occurred once in 12,000 live births in the United States. In such babies, the left side of the heart is usually unable to pump sufficiently to sustain life for more than a few days. Early in his career, Bailey regretted having parents told, “Your baby isn’t going to live.” The solution seemed simple—just exchange the baby’s heart. By 1984 there were two potentially acceptable alternatives for treating the condition: palliative surgery and human-heart transplantation. Palliative surgery helps the defect but does not cure it. Too many vital parts of the heart are missing. At the time of Baby Fae’s transplant, multi-stage palliative surgery was reported to have been performed successfully in two hospitals, both on the East Coast. Unfortunately, some writers reported one surgeon’s success rate with only the first stage of the surgery, giving the erroneous impression that palliative surgery was 50 percent successful overall. By a conservative estimate, 2,000 babies with hypoplastic left-heart syndrome were born from the time palliative surgery was successfully begun in the United States (January, 1979) until Baby Fae’s transplant. According to Associated Press interviews (published November 25, 1984) at Children’s Hospital in Boston and Children’s Hospital in Philadelphia (the major institutions reporting any success with this procedure), 130 babies went through the first stage of surgery and 55 survived (42.3 percent). But the story does not end there. Because it was a two-stage surgery, 100 percent of these babies would die without the second-stage major surgery. It is not known how many of them eventually became candidates for the second surgery. But at the time of Baby Fae, only four of the surviving 55 had undergone the second surgery, and only two of them survived (1.54 percent of those undergoing the first surgery). And now it is a three-stage surgery. But what about human-heart transplantation? The survival record is excellent now. In the Cape Times (November 26, 1984), Dr. Christiaan Barnard, the South African surgeon who pioneered human-heart transplantation, reported the difficulties of performing transplants on infants. “The situation with an infant is much different. Death is often only a heartbeat away.” Barnard emphasized the difficulty of finding donor hearts. “Adult donor hearts usually come from brain-injured persons.… Such injuries occur seldom in infants....” To appreciate the problem Bailey faced, one cannot ignore the historical context under which this surgery took place. It has been estimated that approximately 10,000 newborns died from Hypoplastic left-heart syndrome in America alone between the first and only newborn-heart transplant (performed in 1967) and Baby Fae’s surgery (in 1984). The 1967 operation was performed in New York by Dr. Adrian Kantrowitz, using the heart of an anencephalic (brain-absent) donor. That patient died within hours of the operation. At the time of Baby Fae’s surgery, heart transplantation for a newborn had not been attempted in the United States for almost 17 years. Could it be that palliative surgery and human-heart transplantation were not realistic options for many of these babies, and that seeking another option was reasonable? Bailey’s associates in neonatology and cardiology had too often experienced the heartache of having to tell young parents that there was no hope for their newborns. The only possibility for these babies to live a really normal, active life, he thought, would be a heart replacement. What about animal hearts? (Fifty thousand valves made of calf- and pig-heart tissues were used to replace faulty human-heart valves every year.)