Stephanie Fae Beauclair was born on October 14, 1984 at a hospital in Barstow, California. Her mother, 24-year-old Teresa Beauclair, was unemployed and had recently separated from Stephanie’s father. Right away, it was clear that something was wrong; delivered three weeks premature, Stephanie weighed only five pounds at birth and was blue all over – a sign of improper oxygen circulation. Stephanie and her mother were immediately driven by ambulance to Loma Linda Medical Center, a Seventh-Day Adventist hospital 60 miles outside Los Angeles. Here, Teresa received the terrible news: Stephanie had been born with a rare congenital condition called Hypoplastic Left Heart Syndrome or HLHS, in which the left side of the heart is underdeveloped. Affecting one in 10,000 babies, HLHS is invariably fatal. Teresa was given two options: leave Stephanie in the hospital to die, or take her home to die. Teresa opted to have Stephanie baptized and move into a nearby motel room where could gather her thoughts.
It was then that fate intervened in the form of Dr. Leonard Lee Bailey, a Loma Linda surgeon who had just returned from a medical conference. During his residency at Toronto’s Hospital for Sick Children in the 1970s, Bailey had seen dozens of otherwise healthy children die of HLHS, and was frustrated by doctors’ helplessness in the face of the disease. Nearly all attempts to repair the damage surgically failed, leaving heart transplants as the only viable option. But while by the 1970s heart transplantation was a well-established procedure, the problem lay, as previously mentioned, with the lack of available donor organs. Even today, some 2000 babies are born every year requiring heart transplants, while only around 300 are capable of donating the required organs. The majority of these are anencephalic, meaning they are born without fully-developed brains or skulls. However, few of these babies actually become organ donors, for the criteria for establishing brain death – the key prerequisite for organ donation – are often complex and ambiguous, and in any case few parents actually consent to having their child’s organs donated. In the face of such dire shortages, Bailey became an enthusiastic proponent of xenografting – the transplantation of organs from other, non-human species.
Xenografting was not a new idea, but it had never been successfully carried out. In 1964 surgeon James Hardy transplanted the heart of a chimpanzee into the chest of a 68-year old man. While the heart started beating on its own, the patient died after only 90 minutes. In 1977, heart transplant pioneer Christiaan Barnard piggybacked the heart of a baboon on the circulatory system of a 25-year-old woman, but she died five hours later. Barnard would later use the same technique with a chimpanzee heart and a 59-year-old man, who lasted four days before dying. Throughout the 1960s surgeons Thomas Starzl and Keith Reemtsma had greater success transplanting primate kidneys into human patients, but even these lasted only two months before they were rejected by the recipient’s body. Yet despite this dismal track record, Bailey was confident that with proper immune matching techniques and recent advances in immunosuppressing drugs, a xenograft could keep a patient alive long enough for a proper human organ to be located and transplanted. In 1976, this conviction led Bailey to the Loma Linda University School of Medicine, where he performed more than 200 experimental heart transplants on infant mammals including goats, sheep, and baboons in order to perfect the technique. All he needed now was a human patient to test his theories. Upon learning of her case, Bailey set his sights on Stephanie Beauclair.
Shortly after returning to Loma Linda, Bailey visited Teresa Beauclair at her motel and offered to perform the experimental transplant free of charge. Teresa agreed, and on October 19 Stephanie was readmitted to Loma Linda so that her tissues could be matched with a viable donor. The donors in question were seven young female baboons obtained from the Foundation for Biomedical Research in Texas. While around 70% of humans have pre-formed antibodies against baboon tissue, encouragingly Stephanie was found to be among the 30% who did not. Still, as many at the time pointed out, baboons were an unusual donor choice, given that other apes – particularly chimpanzees – are more closely related to humans in evolutionary terms. When questioned about this, Bailey, a devout Seventh-Day Adventist, replied:
“Er, I find that difficult to answer. You see, I don’t believe in evolution.”
On October 26 the tissue-matching results came back, indicating that Stephanie was most compatible with a nine-month-old baboon named Goobers. By this time Stephanie’s condition had begun to deteriorate, her organs shutting down one by one. It was now or never. So on the same day Stephanie Beauclair and Goobers were wheeled into the operating room and the pioneering surgery began. The procedure took five hours to complete, Bailey painstakingly reconnecting Stephanie’s tiny blood vessels to Goobers’s walnut-sized heart. Then, at 11:35 AM, the baboon heart began to beat on its own in Stephanie’s chest. Sandra Nehlsen-Cannarella, an immunologist who assisted with the surgery, later described the scene:
“[Stephanie’s] new heart began to beat spontaneously. There was absolute awe. The mood was somber, not euphoric, but there wasn’t a dry eye in the house. It was an overwhelming feeling of accomplishment and satisfaction, to see her literally transformed from a helpless cripple.”
Three days later, nurses weaned Stephanie off her respirator and she began to breathed on her own. Colour returned to her pale blue skin, and despite the giant incision running down her chest she looked for all intents and purposes like a healthy little girl. Bailey was ecstatic, boldly predicting that Stephanie would live to see her first – if not her 20th – birthday. The next day, he held a press conference to announce his triumph to the world, fighting back tears as he predicted:
“Infants with heart disease yet to be born will someday soon have the opportunity to live, thanks to the courage of this infant and her parents.”
In order to protect the privacy of mother and child, Loma Linda refused to divulge any personal details and referred to Stephanie simply as “Baby Fae,” the name by which she would become globally famous. Footage of the tiny patient was broadcast all around the room, and hundreds of well-wishers flooded her hospital room with cards and flowers, praying for her full recovery.
Unfortunately, Bailey’s boundless optimism proved misplaced, for while Baby Fae thrived for a while, her body soon began to reject the foreign organ and her condition rapidly deteriorated. Her kidneys failed, her heart developed a blockage, and on November 15, 1984 Baby Fae died, having survived the surgery by 21 days – longer than any previous xenograft recipient. In hindsight her death was inevitable, for while Bailey had hoped to keep her alive until a human heart became available, no such organ was forthcoming. Furthermore, Baby Fae’s blood was Type O, a type shared by fewer than 1% of baboons. Fae’s body was thus fundamentally incompatible with Goobers’s Type AB organs.
The Baby Fae case became a media sensation, inspiring dozens of works of pop culture including a line in the 1986 Paul Simon song “The Boy in the Bubble.” However, it also ignited a storm of controversy that still rages to this day. While many commended Bailey for his pioneering efforts, others decried the procedure as morally and ethically repugnant. Particularly incensed were animal rights activists, with Lucy Shelton of People for the Ethical Treatment of Animals declaring:
“This is medical sensationalism at the expense of Baby Fae, her family, and the baboon.”
Philosopher Thomas Regan argued that all beings, human or not, have a right to life, writing that:
“Like us, Goobers was somebody, a distinct individual. Those people who seized Goober’s heart, even if they were motivated by their concern for Baby Fae, grievously violated Goobers’s right to be treated with respect. That she could do nothing to protest, and that many of us failed to recognize the transplant for the injustice that it was, does not diminish the wrong, a wrong settled before Baby Fae’s sad death.”
Bailey responded to such criticisms with bafflement, stating:
“People in southern California have it so good that they can afford to worry about this type of issue. When it gets down to a human living or dying, there shouldn’t be a question [of using an animal to save that human]. We’re not in the business of uselessly sacrificing animals, we’re forced to make a choice. We can either decide to continue to let these otherwise healthy human babies die because they are born with only half of their heart, or we can intervene, and, in so doing, sacrifice some lesser form than our own human species.”
The Loma Linda Center for Christian Bioethics agreed with Bailey, stating:
“On an ethical scale, we will always place human beings ahead of subhumans, especially in a situation where people can be genuinely saved by animals. That is the story of mankind from the very beginning, Animals, for example, have always been used for food and clothing.”
While doctors and ethicists like Arthur L. Caplan of the New York University School of Medicine defended Bailey, arguing that:
“He was really trying to find an answer for very young children who needed a transplant. He was driven by a real desire to help . . . not fame, not fortune, not money, not greed.”
… others questioned whether the baboon heart transplant had actually been necessary. While Bailey maintained that the procedure was the only option due to a lack of donated infant hearts, according to Paul Teraski, director of the Southern Regional Organ Procurement Agency, a viable human heart was available on the day of Baby Fae’s surgery, but Bailey had chosen deliberately chosen not to use it:
“I think that they did not make any effort to get a human infant heart because they were set on doing a baboon.”
Bailey’s assertion that there was no other option is further undermined by the work of surgeon William Norwood of the Children’s Hospital Philadelphia, who at the time had developed a surgical procedure to correct HLHS with a success rate of 40%. By contrast, despite Bailey’s reassurances to Teresa Beauclair, his baboon heart procedure had a zero percent chance of working long-term. Faced with these accusations, Bailey still defended his decision to operate, stating:
We were not searching for a human heart. We were out to enter the whole new area of transplanting tissue-matched baboon hearts into newborns who are supported with antisuppressive drugs. I suppose that we could have used a human heart that was outsized and that was not tissue-matched, and that would have pacified some people, but it would have been very poor science. On the other hand, I suppose my belief that there are no newborn hearts available for transplantation was more opinion than data or science, but it is scientific to acknowledge that the whole area of determining brain death of newborns is very problematical.”
This issue of medical necessity is part of a larger ethical controversy over the difference between therapeutic and experimental procedures. According to most medical ethicists, a procedure can only be considered therapeutic if there exists a high probability of benefiting the patient long-term. As the odds of Baby Fae surviving long-term with a baboon heart were essentially zero, by this definition Bailey’s procedure can only be classified as experimental. For this reason, Bailey’s procedure was harshly criticized as unscientific by the American Medical Association, who argued that experimental procedures should only be performed as part of larger, systematic medical studies and not as one-offs.
Further criticism has centred on whether Bailey obtained proper informed consent from Teresa Beauclair – or whether parents can even ethically volunteer their children for experimental procedures. Had Bailey not offered to perform the surgery for free, out-of-pocket the procedure would have cost over $250,000, plus $20,000 in immunosuppressant drugs every year for the rest of Baby Fae’s life. As Teresa had no health insurance at the time and thus no other options for saving her baby’s life, critics argue that she was fundamentally incapable of giving informed consent. Furthermore, Teresa later claimed that the consent form Bailey had on file was different from the one she signed, which optimistically claimed that the transplant would keep Fae alive “long term.” And while Bailey claimed he had obtained consent from both parents, Fae’s father was not in fact present at the time of the signing. As Boston University law professor George Annas later wrote:
“This inadequately reviewed, inappropriately consented to, premature experiment on an impoverished, terminally ill newborn was unjustified. It differs from the xenograft experiments of the early 1960s only in the fact that there was prior review of the proposal by an IRB. But this distinction did not protect Baby Fae. She remained unprotected from ruthless experimentation in which her only role was that of victim.”
Yet despite these controversies, the Baby Fae experiment gave Bailey the confidence to continue his research, and the following year he performed the world’s first successful human infant heart transplant. The patient, Eddie Anguiano – known at the time as “Baby Moses” – not only survived the procedure, but is still alive today – the oldest living recipient of an infant heart transplant. Bailey would go on to perform 376 infant heart transplants and become a leading expert on congenital heart disease, serving at Loma Linda for 42 years. Leonard Lee Bailey died of throat cancer on May 12, 2019 at the age of 76.
Since 1905, 33 xenografts have been performed on humans, none of which have been successful. Nonetheless, research on the practice continues, with scientists exploring ways of genetically modifying animals like pigs to make their organs more compatible with humans. Given the relative dearth of viable donor organs – especially for infants and young children – such techniques will be vital to saving lives in the future. This contemporary research owes much to Baby Fae, whose controversial 1984 surgery pushed the boundaries of what was considered medically possible. As Leonard Bailey told the New York Times in 1990:
“We wouldn’t be where we are if it weren’t for Baby Fae. We’re not as crazy as everyone believed. The experiment gave us the confidence to continue.”
Nonetheless, the subject of infant heart transplants – and the risky but necessary experiments that make them possible – will always remain a controversial one. The moral and ethical quandaries involved in saving the lives of young children are perhaps best summarized by theologian Paul Ramsey, who wrote:
“If today we mean to give such weight to the research imperative, then we should not seek to give a principled justification of what we are doing with children. It is better to leave the research imperative in incorrigible conflict with the principle that protects the individual human person from being used for research purposes without wither his expressed or correctly construed consent. Some forms of human experimentation should, in this alternative, be acknowledged to be “borderline situations” in which moral agents are under the necessity of doing wrong for the sake of the public good. Either way they do wrong. It is immoral not to do the research. It is also immoral to use children who cannot themselves consent and who ought not to be presumed to consent to research unrelated to their treatment. On this supposition research medicine, like politics, is a realm in which men have to “sin bravely.””
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Oliver, Ansel, Iconic “Baby Fae” Surgeon Leonard Bailey Dies at Age 76, Spectrum, May 13, 2019, https://spectrummagazine.org/news/2019/iconic-baby-fae-surgeon-leonard-bailey-dies-age-76
Langer, Emily, Leonard Bailey, Transplant Surgeon Who Gave ‘Baby Fae’ a Baboon Heart, Dies at 76, The Washington Post, May 16, 2019, https://ift.tt/l7fSoHV
What Happened When a baby Girl Got a Heart Transplant From a Baboon, TIME, October 26, 2015, https://time.com/4086900/baby-fae-history/
Pence, Gregory, Classic Cases in Medical Ethics, McGraw-Hill, Boston, 1990, https://web.archive.org/web/20160418213419/http://www-bcf.usc.edu/~bwrobert/teaching/mm/articles/Pence2004_Ch14.pdf
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by Gilles Messier - June 24, 2022 at 12:18AM
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