Note: This is the position paper from the Bioethics Committee of the Florida Pediatric Society concerning Anencephalic Organ Donors. The Florida Society of Neonatologists is being asked to endorse this position. Please add your comments to the discussion section.

NEONATES WITH ANENCEPHALY AS ORGAN DONORS

Committee on Bioethics, Florida Pediatric Society

BACKGROUND: The intention of the following statement is to provide guidance to Pediatric practitioners in their interaction with parents, and to provide guidance to professional and legal stakeholders on the position of the Florida Pediatric Society regarding this matter of both practice and policy.

An infant with anencephaly is born without a forebrain and a cerebrum, but is able to survive for a short time hours or days) with a brain stem that supports breathing, sucking, and other autonomic functions. However, anencephaly is uniformly fatal.

At the time of the drafting of this statement, under Florida law, parents of infants with anencephaly, diagnosed prenatally or perinatally, are without the option to offer their child's organs for transplantation prior to the time of the legal (whole brain or cardiopulmonary) death of the child. Parents who might choose to donate their child's organs may not do so until a time when the organs themselves may no longer be useful for transplantation. A decision to donate the organs of one's anencephalic newborn is a personal decision arrived at through a search of deeply conflicted emotions. Many parents would want good for another family to come from their own disappointment. The trauma to the parents of an anencephalic newborn is appropriately met with grief as in any personal loss, but neonatal transplantation now makes possible a partial gain out of what has in the past been a total loss. Many parents might desire, and should be permitted, the satisfaction of knowing that they have perpetuated the gift of their child's existence by saving the lives of other ill infants.

Anencephaly has an estimated incidence of 0.3 per 1000 live births. This is frequent enough to be seen by most pediatricians and often enough that we all know about it. The diagnosis is usually made before birth with the frequent use of prenatal ultrasound. There is general agreement that the diagnosis is possible with very little error on a prenatal basis and conclusively after birth.(1) The most commonly accepted criteria for diagnosis Is: (i) a large portion of the skull is absent; (ii) the scalp, which extends to the margin of the bone, is absent over the skull defect; (iii) hemorrhagic, fibrotic tissue is exposed because of defects in the skull and scalp; (iv) recognizable cerebral hemispheres are absent. Outcome of this unique group of deformed babies is also generally accepted to be death within 2 months with the majority dying within a few days of birth.(1) Only with the provision of extraordinary measures has life been extended.(2) Within these defined parameters we have a condition which can be diagnosed without confusion and which will uniformly result in death. It seems reasonable to propose that these hopelessly doomed infants could be organ donors that might save the life of another infant should the parents so desire.

With the advent of transplantation as an acceptable option for situations where death or severe handicap was the only previous option, the donor pool becomes a critical factor. This varies with the organ Involved, but is especially evident in the area of heart transplant in the newborn age group. Currently about one-half of the listed possible recipients die before a suitable donor is identified. Previous experience with organ donation from anencephalic infants has not gone well primarily because they were not initiated until after legal death of the donor. In all of the situations where legal death has occurred the incidence of successful transplantation has been small, ranging from 0 to 30%. This has included a variety of attempts to maintain the viability of the target organs using drugs and ventilation. The other alternative has been to allow donation while there are still some signs of brain stem function remaining. This was advocated by the AMA Council on Ethical and Judicial Affairs.(3) The result was a lot of emotional debate and several requests for the Council to reconsider its opinion. The final result was a reversal of the original decision. At the time of drafting of this document we don't know of any comparable group that has advocated the use of organs from anencephalic infants that still have signs of brain stem activity. Another proposal has been to change either the law about the determination of death in the case of anencephalic infants or the law that regulates donation of organs. Both introduction of legislation to change the law and appeals to the court system have not been successful. An example of a court decision is the recent case from South Florida illustrating one family's attempt to make the gift of organ donation possible through their newly born anencephalic infant.(4) With a great deal of persistence they got involved with the court system. They made a request to expand the common law definition of death to equate anencephaly with death. Their petition was denied by several courts including the Florida Supreme Court.

CONCLUSION AND RECOMMENDATION: There is a real need for organs for transplantation that would extend the life of infants with organ failure. In the case of newborns this is true primarily for certain congenital malformations of the ~ liver and kidneys. Utilization of organs from anencephalic infants would significantly improve the chances for life of such infants. Diagnosis and counseling should be offered to parents of an anencephalic fetus at the earliest possible time during the pregnancy. Pediatricians should act as advocates for parents requesting organ donation from anencephalic neonates. It should be possible for parents to have such a request honored. Consequently, Pediatricians should advocate for changes in organ donor laws relating to anencephalic newborns, to honor parents' wishes to allow the perpetuation of the gift of their child's' existence to save the lives of other infants.

BIBLIOGRAPHY

Committee on Bioethics, 1996
Donald V. Eitzman, MD, Chair
William Morgan, MD
Steve Freedman, Ph.D.

Judith Waldman, Consultant

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                                                                                                 Donald V. Eitzman, MD

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