Anencephaly - Organ Transplantation?

By Byrne, Paul A.; Evers, Joseph C. et al. | Issues in Law & Medicine, Summer 1993 | Go to article overview

Anencephaly - Organ Transplantation?


Byrne, Paul A., Evers, Joseph C., Nilges, Richard G., Issues in Law & Medicine


A Fort Lauderdale infant with anencephaly, Theresa Ann Campo Pearson, was recently the subject of many newspaper articles, television shows, and medical and legal discussions. Her parents had filed a petition in a Florida circuit court for the "right" to authorize the excision of Theresa Ann's unpaired vital organs.(1) The petition sought a judicial determination that anencephalic infants be considered legally dead for the purposes of organ transplantation.(2) The trial court's order denying the petition was summarily upheld on appeal.(3) The Florida Supreme Court affirmed, thus rejecting an expansion of Florida's common law to include anencephaly within the legal definition of death.(4)

In this article, we will consider the case of Theresa Ann in the context of the brain death controversy. We will show how the attempt to declare death in a living baby with anencephaly is but another step in the growing acceptance of something less than actual death as legal death for the purpose of acquiring transplantable organs.

Theresa Ann was diagnosed antenatally as having anencephaly. Soon thereafter, plans were made to remove her organs for transplantation following her birth. After she was born, Theresa Ann was intubated and received ventilatory support. The ventilator was removed after about one week. Theresa Ann then breathed on her own for a period of time, clearly indicating that the brain stem function governing spontaneous breathing was intact. Other brain stem functions that control heart rate, blood pressure, salt and water balance, pituitary-endocrine organ functions, as well as many other organs and systems, were presumably also intact and functioning in Theresa Ann's body.

At least some of the physicians treating Theresa Ann knew, and made others aware, that her brain was functioning. Based on this, the Florida Supreme Court ruled that Theresa Ann could not be "brain dead" under Florida law.(5)

Anencephaly

Anencephaly results from a failure of the neural tissue to completely close at the cephalic end. Even though anencephaly literally means the absence of the brain, functioning neural tissue is always present. The telencephalon is usually absent, but the brain stem is present. Absence of the cranium (acrania) is a constant finding. Closure of the cephalic end of the neural tube normally occurs between the second and third week of development. Thus, anencephaly is a manifestation of an abnormality of development that occurs sometime between conception and two to three weeks of gestation.(6)

Prenatal Diagnosis

Alpha-fetoprotein (AFP) is a glycoprotein normally synthesized by the fetal liver but not by the adult liver. Some AFP is normally present in the amniotic fluid. When the neural tube remains open (in anencephaly or spina bifida with myelomeningocele), there can be abnormally large quantities of AFP in the amniotic fluid, and as a result there is elevation of AFP in maternal serum. Screening of maternal serum for elevated amounts of AFP, analysis of AFP in amniotic fluid, and ultrasound examination of the fetus can lead to a diagnosis of anencephaly. (One must be aware of the potential for error in all of these tests.)

Postnatal Diagnosis

The appearance of an infant with anencephaly is characterized by the absence of bone and scalp over the part of the head posterior to the forehead. The exposed brain is covered by a thickened angiofibrous stroma. Recognizable cerebral hemispheres are absent.

Brain Death Law

The Uniform Determination of Death Act (UDDA) was recommended for adoption in all jurisdictions of the United States by the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research.(7) The UDDA reads as follows:

An individual who has sustained either (1) irreversible cessation of

circulatory and respiratory functions, or (2) irreversible cessation of all

functions of the entire brain, including the brain stem, is dead. …

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