Academic journal article Issues in Law & Medicine

The Infant with Anencephaly: Moral and Legal Dilemmas

Academic journal article Issues in Law & Medicine

The Infant with Anencephaly: Moral and Legal Dilemmas

Article excerpt

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. …

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