The infant with anencephaly: moral and legal dilemmas.

• Author: Berger, Debra H.

The Infant with Anencephaly: Moral and Legal Dilemmas

Advances in modern medicine have given birth to realities that were once merely dreams. Medical technology has provided today's patients with alternatives that were previously nonexistent. With the arrival of these medical milestones difficult moral, ethical, and legal issues have evolved. Both physicians and lawyers must be trained to confront these controversies and establish a justifiable balance between patient well-being and that which is medically, legally, and morally ethical.

One of the most controversial medical issues brought about by today's new technology is the use of anencephalic babies as organ donors for other infants requiring transplantation. Whether the well-being of the anencephalic organ donor or the well-being of the recipient should be given precedence is a controversy among physicians and lawyers alike. The purpose of this article is to identify, review, and evaluate the medical-legal issues that have led to the current impasse that exists concerning the use of anencephalic infants as organ donors.

Lack of legislation and the sparsity of judicial precedents are both factors which have made the decision-making process extremely difficult in this area. In reviewing and evaluating this difficult area, major focus shall be given to the following topics: (i) current legal definitions of brain death; (ii) current statutes governing human organ transplantation; and (iii) the personhood status of newborns with disabilities.

Anencephaly Defined

When addressing the ethical and legal issues involving newborns with an anencephalic condition, it is first necessary to have a clear definition of anencephaly. Anencephaly is a congenital neurological defect. It is a condition which is frequently referred to as "babies born without a brain." The incidence of anencephaly is approximately one for every one thousand births with the anomaly occurring more frequently in females than in males.(1)

Among the clinical features of anencephaly is absence of the top portion of the skull. Facial features include protruding eyeballs due to small and shallow eye orbits; the ears are malformed, and the neck is extremely short. The cerebrum and cerebellum portions of the brain are almost completely absent.

The cerebrum is that portion of the brain which controls voluntary muscular movements and higher mental processes such as speech, memorization capabilities, reasoning, and emotions. The cerebellum is that portion of the brain which controls coordination of voluntary muscular movement and maintenance of body equilibrium.

In the infant with anencephaly, there exists only rudimentary functional brain stem tissue(2) which is that portion of the brain that supports breathing and other autonomic functions such as control of blood pressure, stomach-intestinal regulation, and other homeostatic functions of the body. Without medical intervention, breathing and autonomic responses may continue for a couple of weeks,(3) but ultimately, because of the absence of a cerebrum and cerebellum, this anomaly has not been found to be compatible with life.

Anencephaly is usually diagnosed in utero(4) at which time parents sometimes elect to have an abortion or request that after birth their child be able to serve as an organ donor for other infants. Frequently the child either dies in utero or is stillborn.

Infant Organ Transplants

Today, human tissues and organs are being successfully transplanted from one person to another with great regularity. Generally when a person is in need of a body part, the organ donor is the victim of an automobile accident. However, since serious auto accidents are not plentiful and usually involve adults, the supply of organs necessary to meet the demand of human organ donation is much better fulfilled in adults than it is in small infants and children. Thus, there exists a severe shortage of organ donors for infants who are in need of kidneys, hearts, or other vital body organs.

The sources from which infant organs can be obtained are very limited. Child abuse victims, sudden infant death syndrome (SIDS) babies, and infants with anencephaly(5) represent an almost exhaustive list of potential donors for other infants. Because most child abuse victims are usually older children, and their organs are therefore too large, they cannot serve as donors for infants born with congenital defects requiring organ transplantation.

In addition, it is essential that vital organs which are to be transplanted remain well perfused(6) and oxygenated until the very moment of harvesting.(7) If this is not done, they become nonviable and unsuitable for transplantation. It follows, therefore, that SIDS infants are often unsuitable as organ donors due to the irreversible organ damage that usually occurs because respiration and circulation are not begun within minutes of the SIDS death.(8)

Thus, infants with anencephaly who are born with healthy organs but only a functional brain stem(9) emerge as a most attractive source of potential donors for other infants.

Controversies Concerning the Use of Infants with Anencephaly as Organ Donors

Current statutes require that a donor be declared legally dead before the removal of any vital organs from his body.(10) Because infants with anencephaly are born with a functioning heart and brain stem, they are not considered dead either according to the cardiopulmonary definition of death(11) or by application of the brain death criteria as set forth by the Ad Hoc Committee of the Harvard Medical School.(12)

Although infants with anencephaly are born with a functional brain stem, as time passes this function becomes progressively less adequate until the eventual total cessation of brain stem function occurs. This brain stem deterioration results in progressively poorer perfusion and oxygenation to the body tissues, and, with time, an infant's organs will become damaged and unsuitable for transplantation.

Since brain death is not a rapidly nor easily made diagnosis,(13) cardiopulmonary cessation may even occur before brain death can be pronounced. Because infants with anencephaly, as living human beings, cannot be used immediately after birth for organ transplantation, and because the physician must wait until there is a totally flat electroencephalogram(14) (EEG) to pronounce the infant dead, the above mentioned organ damage will almost certainly occur.

Some physicians, lawyers, and medical-legal ethicists believe that there is only one logical conclusion: maintain the infant on external support mechanisms such as a mechanical ventilator so that his body organs will not suffer irreversible damage before he can be pronounced legally dead using brain death criteria. This approach means that infants with anencephaly would be placed on respirators for the sole purpose of harvesting their organs.

Other commentators in the field however maintain that such treatment is unjustified since its purpose is not to help the infant but rather to "keep the desired organs intact."(15) They believe that the use of infants with anencephaly as potential organ donors tempts society to use the child simply as a means to an end.(16) It is their position that there should be no significant change in the medical intervention that would ordinarily be initiated for an infant if he were not to be used as an organ donor.(17)

Transplantation and a Definition of Death

Before a full discussion of the issues concerning the use of infants with anencephaly as organ donors can proceed, a clear understanding of brain death and its development and ultimate emergence as a major determinant in the definition of death is necessary.

Prior to the 1960s a cardiopulmonary definition of death was sufficient to determine death in an individual. A cardiopulmonary death is the irreversible cessation of all circulatory and respiratory function. However, when biomedical technology created such life saving devices as the heart-lung machine that is used to replace a patient's heart and lung function during cardiopulmonary by-pass surgery, and the mechanical ventilator which breathes for patients who are incapable of spontaneous respiration, the need for a new definition of death emerged. This definition could no longer focus solely upon the cardiopulmonary system, but instead had to rely heavily upon the cessation of cerebral function as the overwhelming criteria for the determination of death.

Responding to this need in 1968, the Ad Hoc Committee of the Harvard Medical School set forth its guidelines for the use of brain death criteria as a definitive determination of death.(18) In its report the Harvard Committee emphasized that the patient must exhibit (1) total unreceptivity and unresponsivity to even the most painful external stimuli; (2) lack of spontaneous respiration by the patient within the first three minutes that he is taken off the mechanical respirator; (3) absence of reflexes such as pupillary reaction, swallowing, yawning, corneal (blinking) and pharyngeal (gag); and (4) a flat electroencephalogram.(19)

Additionally, the committee recommended that this complete series of tests be repeated at least twenty four hours later with no change.(20) The validity of these criteria also requires the exclusion of hypothermia (subnormal body temperature) and central nervous system depressants such as barbiturates(21) because they may also depress the brain and mimic brain death.

These criteria were set forth by the Harvard Committee for several reasons. One of these reasons was to alleviate the anticipated controversy that would eventually be caused by the recent development of ventilators and cardiopulmonary by-pass machines.(22) Another reason was to smooth a pathway for the developing field of transplantation.(23) In order to make organ transplantation a practical reality, a cerebrally oriented definition of death was necessary so that organ procurement could take place...