3. ANENCEPHALIC BABIES
The literal meaning of anencephaly is "no brain." But the term is not exactly accurate for
an = negative enkephalos = brain
describing the condition of anencephalic babies. Such babies have no cerebrum or cerebellum but they do have a brain stem. The brain stem allows them to breathe and allows their hearts to beat. But the babies cannot see, hear, or feel anything. They will never be able to think or achieve what is called "personhood."
Anencephalic babies are thus not technically brain dead. Yet there is general consensus that heroic measures should not be used to keep them alive. In fact, anencephaly may be one of the few medical conditions that all doctors agree is futile to treat.
About 1000 anencephalic babies are born in the United States each year. The condition can be diagnosed prenatally, and most women (about 95%) who learn that they will have an anencephalic child choose to have an abortion. Of the 5% of the anencephalic infants who are born, about 55% are stillborn. The rest?the remaining 1000?are said to be "born dying."
Sometimes the parents of an anencephalic infant want to donate the infant's organs to other babies who need healthy organs. They say that, by donating the newborn's organs, they feel that the pregnancy would at least have had some value: their own loss can be another family's gain. In the United States, about 2000 babies each year need organs, and the only suitable organs for tiny babies are those from other tiny babies.
Organs cannot, however, be removed from individuals who are alive, and anencephalic babies, though born dying, are not dead. Thus, the debates have raged about whether it is appropriate to make an exception exclusively with anencephalic infants, changing the definition of "dead" in their case so that needed organs can be removed in time to be of use.
In 1992, for example, the parents of an anencephalic baby named Baby Theresa wanted to donate her organs. But the courts?all the way to the Florida Supreme Court?would not declare her dead. She lived for ten days. When she died, her organs could no longer be transplanted. On the day of her death, Baby Theresa's parents and a surgeon appeared on the Phil Donahue Show to talk about the need to change the law, so that organs from infants like Baby Theresa could be made available to others.
Not all parents who have an anencephalic fetus choose abortion. Not all those whose babies are born alive want to donate the organs. Some do not even choose a strategy for caring for the infant that focuses strictly on keeping the baby comfortable while s/he dies. One such parent was the mother of Baby K. She fought the hospital, the doctors, and even the baby's father (to whom she was never married) to continue aggressive treatment for Baby K, despite the futility of the treatment. The fight went all the way to the U.S. Supreme Court.
Baby K was born on October 13, 1992, at Fairfax Hospital in Virginia. Her mother knew from the 16th week of her pregnancy that her baby's brain had not developed. But she was adamant that Baby K be kept alive, motivated by a strong religious conviction that "all life is precious" and that God, rather than herself or the doctors or the law, should decide how long the baby would live.
Baby K left the hospital when she was seven weeks old. From there, she went to a nursing home (no neonatal intensive care unit?NICU?would accept her). Every time Baby K stopped breathing, her mother would rush her back to Fairfax Hospital to be resuscitated and put on a respirator. Baby K's medical bills ran up to $500,000. She lived longer than most anencephalic babies, but she died of a heart attack when she was 2.5 years old.
- Carol Levine, Taking Sides: Clashing Views on Controversial Bioethical Issues, Dushkin Publishing Group, Inc.1995, 6th edition, 264-277.
- NY Times, 1994, 20 February, 20.
- Washington Post, 1994, 7 October, A1.
- Washington Post, 1995, 7 April, B3.
- Gregory Pence, Classic Cases in Medical Ethics, McGraw-Hill, Inc. 1995, 2nd ed. 327-335.
Students should understand the following:
- Stages of fetal development
- Characteristics of anencephalic babies
- How prenatal tests (such as measurement of alphafetoprotein, amniocentesis, ultrasound, etc.) work and the benefits of and problems created by such tests
- Problems associated with defining "personhood"
- Why anencephaly presents a special problem for organ transplantation
- Legal arguments associated with the definition of personhood for anencephalic babies
- Legal issues associated with the treatment of anencephalic babies and organ harvesting
Suggested questions for discussion
- What position do you think you would take if you had an anencephalic baby?that of Baby K's mother, that of Baby Theresa's parents, or a different position?
- Do you think individuals have the right to demand and get expensive long-term care in futile cases such as the case of Baby K?
- Do you think it is appropriate for insurance companies to cover the costs in such cases? What does this do to the rates for others covered by the same company?
- Does a situation like Baby K's make doctors "instruments of technology?" Is this an appropriate position for them to be in?
- Discussions of organ transplantation include words like "organ donation," "harvesting organs," and other euphemisms. If an organ is a "gift," should the parents be allowed to give that gift on behalf of an infant?
- Do you think that the recipient of an organ has lasting obligations to the donor of that organ or the donor's family? If so, what form should the obligations take?
- Do you think that the definition of "brain dead" should be changed in order to benefit the small number of babies who need new organs?
- Baby K lived for 2.5 years; her medical bills totaled half a million dollars. Do you think this is an appropriate use of the money?
- Do you think Baby K's mother's religious beliefs should trump issues of fair distribution of resources? (For example, the money spent on Baby K's care could have been used to provide prenatal care for thousands of poor women and possibly improve the health of their unborn babies.)
- Is it possible and/or appropriate to make medical decisions on the basis of dollars?
- What would you say constitutes personhood?
- Nurses who took care of Baby K felt that her dignity as a human being was violated. They saw no point in prolonging her dying with technology. Her mother did not agree. Where do you stand in this debate?
Topics for discussion/written assessment
- Consider the subject of respect for patient autonomy, that is, respect for individual freedom and choice. How is this problematic when dealing with anencephalic newborns?
- Was Baby K?s dignity violated by the intervention of technology?
- Should the professional autonomy of the nurses who cared for Baby K have been factored into the decisions that were made about Baby K's care?
- In the treatment of devastating medical conditions with new technologies, what issues should be considered? What similarities and differences exist in the use of respirators and other technologies for anencephalic babies, the iron lung in the 1940s for those with polio, and dialysis machines for those with kidney failure today?
- What personal issues and choices come into play in organ donation and reception?
- What factors might account for the stark differences between the positions taken by the parents of Baby K and Baby Theresa?
- What constitutional, financial, religious, policy, and contractual (i.e. insurance) factors need to be considered when dealing with the treatment of anencephalic children?
Topics for teacher preparation
- The biology of brain development
- Organ transplantation issues
- Insurance coverage issues
- Hospital legal issues
- Trumping hierarchy in futile cases
- Sensationalist media coverage and its effects
- Religious issues and beliefs that affect medical treatments