Baby Theresa’s Gift: Debate Over Organ-Harvesting Laws

In her brief life, Theresa Ann Campo Pearson was a medical marvel, an ethical enigma and a cause celebre. Born without a fully formed brain, she lived for nine days and became the focus of an emotional national debate of the definition of death and the suitability of anencephalic infants as organ donors.

But was Baby Theresa a person? Was she ever really alive?

Two weeks after she was laid to rest in Hollywood, Fla., those vexing questions remain as the tiny infant’s haunting legacy. The answers are the keys to deciding if laws should be changed to permit “harvesting” organs from people with minimal brain function.

“If we think of persons as having interests, prospects, goals and memories, then clearly she was not a person,” said Kenneth Goodman, a medical ethicist at the University of Miami. “At the same time, she was identified as something that looks like us, and we all know that we don’t kill people.”

Anencephalic babies such as Theresa are born with only enough brain stem to regulate reflexive breathing and a heartbeat. She had no skull, no future and no chance for a real life. In most cases of anencephaly--which occurs in about 0.5 to 2 of every 2,000 fetuses in the United States--the infant is stillborn. Theresa, even without life support, lived unusually long as her parents sought to make her vital organs available for transplants.

Laura Campo and Justin Pearson were unsuccessful. Two courts denied their request to have Theresa Ann declared dead, and in the end, even the infant’s corneas were unusable.

However, two days after the baby’s heart and lungs gave out on March 31, the Florida Supreme Court agreed to hear oral arguments this fall on what it called questions of “great public importance” raised by the case.

At the same time, at least two state lawmakers have indicated willingness to propose changes in the statute that prohibits harvesting organs from anyone not certified brain dead.

Medical ethicists, physicians and organ donor specialists continue to confront the moral dilemma of deciding who is alive and who is dead. If anencephalic infants can be declared brain dead today, what about extremely retarded children tomorrow?

Ironically, the intense media attention paid to Baby Theresa worked against the infant’s parents, who knew weeks before her birth that their child was malformed and decided then to offer her as an organ donor. While bravely reiterating that their baby had no chance--”She has no life. There’s nothing,” said Campo--television repeatedly showed the child in the hospital, her tiny hand grasping the finger of her grandmother, who spent days at her side. From the nose down, beneath a cap of cotton gauze, the baby looked perfectly normal.

That, said neonatologist Dr. Ilene Sosenko, was grossly misleading. With the bandages removed from her head, Sosenko said, “it was absolutely terrible to look in and see this rudimentary brain. She was fixed up for the cameras, but these are dying children.”

Adds Leslie Olson, director of organ procurement for the University of Miami, who was present at Theresa’s birth, “She better fit the category of benign tumor, rather than human being. She was a ball of tissue. The question is whether she existed at all.”

Under the laws of Florida and every other state, Baby Theresa was never a viable candidate for organ donation. As long as any brain stem function continued, she remained legally alive, and her organs could not be removed.

Goodman believes the highly publicized case sent the country a “massive mixed message” that is at the crux of the dilemma over defining death in a techno-medical age: While most people could appreciate the parents’ desire to give meaning to Baby Theresa’s birth through organ donation, they are also troubled by the idea of deliberately causing her to die.

The troubling ambivalence continued to the end. At one point during the funeral, grandmother Susan Clarke lifted the 3-pound body from its casket and held it to her breast. “This was my time,” she said later. “I never had a chance to hold her.”