Heritage Snapshot: Part 77

The main question asked by the scientific community regarding Baby Fae’s historic surgery related to the parents’ informed consent: Did they really understand their daughter’s condition and did they fully understand the options for her care? Because the parents had requested anonymity and therefore could not be interviewed by the media, suspicions and accusations multiplied. To put the public’s mind at ease, Loma Linda University Medical Center invited the National Institutes of Health (NIH) to evaluate the process. The NIH report concluded that “as a result of the consent process the parents of Baby Fae fully understood the alternatives available as well as the risks and reasonably expected benefits of the transplant.… The site visitors also believe that the explanation was presented in an atmosphere which allowed the parents an opportunity to carefully consider, without coercion or undue influence, whether to give their permission for the transplant.” On April 21, 1985, Arthur Caplan, PhD, then associate director of the Hastings Center, a bioethics research institute in Hastings-on-Hudson, New York, interviewed Baby Fae’s mother at the close of a biomedical ethics workshop in Loma Linda. In a letter to Bailey, he expressed appreciation for being allowed to chat with her. “I must say the conversation we had was an eye-opening for me. The press had depicted her as being an ill-informed, undereducated individual. I couldn’t help but feel, as a result of my conversation, that the press was not only wrong but insulting to her. She seemed to me to be a very bright, articulate and thoughtful woman.” Why not use a human heart? According to the Regional Organ Procurement Agency of Southern California (ROPA), no acceptable newborn hearts were made available through ROPA’s network of sources for the 12 months preceding Baby Fae’s surgery, probably because no one was performing heart transplants on newborns. Worldwide, not one newborn was transplanted during the 12 months following Baby Fae’s death, even though the opportunity presented itself 40 to 50 times a month in America alone. This fact is eloquent evidence that suitable human donors were indeed rare. Dr. Stuart W. Jamieson, who was both director of Stanford University’s noted heart/lung transplant team and director of its cardiac surgery experimental laboratory, was the first outside scientific consultant with direct knowledge of the Loma Linda project to comment on it publicly. In a New York Times story, published November 11, 1984, he said he strongly supported the scientific procedures used by the Loma Linda scientists that led the way for the October 26 transplant, and said he was “very impressed by the work the team had done.… It was a legitimate and timely thing to do.” His recommendations were few, he said, because Dr. Bailey’s research had been so extensive. Baby Fae died on November 15, 1984. Her new heart did not show the usual evidence of graft rejection. At an emotionally charged press conference the day after Baby Fae died, Bailey, in a prepared statement, said, in part, “Baby Fae’s experience of a brief month or so has been a uniquely human one.… Baby Fae has opened new vistas for all, including the as yet unborn infants with similar lethal heart disease.” In response to questioning, he reported the response of Baby Fae’s mother: “The last thing her mom said to me was not to let the experience be wasted, but to carry it on. And we plan to honor that request.… I think we can be cautiously optimistic that we’ll have an answer for some of these babies in the near future,” he said. “In all fairness to the next baby, we should take the time to carefully review what we’ve learned from this baby we all loved so much.” Baby Fae lived longer than the world’s first several adult human-heart transplants. Research has continued on the volumes of data collected during those 20 days. About 20 percent of babies who need a heart transplant have died while waiting for donors. One died after being on regional and national organ-procurement lists for more than 18 weeks. Our society has benefited in several measurable ways from the controversial baboon-heart transplant. Consciousness has been raised to the plight of newborns needing heart transplants and to the possibility of performing those surgeries. This new awareness has led several other institutions to join Loma Linda University Medical Center in attempting the delicate procedure. Bailey’s account of how he cared for the first three newborn human-to-human heart-transplant patients was published in the New England Journal of Medicine, October 9, 1986. Accompanying the article was an editorial congratulating Bailey and his staff for their successes. The editorial was written by scientists from Stanford University School of Medicine. In November, 1986, the California Legislature approved Resolution No. 481, honoring Bailey and his associates, in recognition of the one-year anniversary of the first successful newborn-heart transplant, on a patient named “Baby Moses.” (It is firmly believed that there would not have been a “Baby Moses” had there not been a Baby Fae. Both the donor and recipient were referred to Loma Linda because of the widespread publicity on Baby Fae. The publicity on “Baby Moses” then made the scientific community and the public aware that newborn-heart transplantation was possible.) Baby Fae’s daring surgery was a landmark case. It has become a reference point in the public’s awareness of hypoplastic left-heart syndrome and the serious efforts being made to save doomed babies. It became the cornerstone of a successful, international, infant-to-infant heart-transplant program begun in Loma Linda about a year later, which has helped hundreds of babies from around the world, including more than 300 under one year of age in Loma Linda. Baby Fae struck a uniquely human chord in most people: the capacity to hope and to cheer those who take great risks to help one little person.