Opinion ID: 1860116
Heading Depth: 1
Heading Rank: 2

Heading: The Medical Nature of Anencephaly

Text: Although appellate courts appear never to have confronted the issue, there already is an impressive body of published medical scholarship on anencephaly. [5] From our review of this material, we find that anencephaly is a variable but fairly well defined medical condition. Experts in the field have written that anencephaly is the most common severe birth defect of the central nervous system seen in the United States, although it apparently has existed throughout human history. A statement by the Medical Task Force on Anencephaly (Task Force) printed in the New England Journal of Medicine [6] generally described anencephaly as a congenital absence of major portions of the brain, skull, and scalp, with its genesis in the first month of gestation. David A. Stumpf et al., The Infant with Anencephaly, 322 New Eng.J.Med. 669, 669 (1990). The large opening in the skull accompanied by the absence or severe congenital disruption of the cerebral hemispheres is the characteristic feature of the condition. Id. The Task Force defined anencephaly as diagnosable only when all of the following four criteria are present: (1) A large portion of the skull is absent. (2) The scalp, which extends to the margin of the bone, is absent over the skull defect. (3) Hemorrhagic, fibrotic tissue is exposed because of defects in the skull and scalp. (4) Recognizable cerebral hemispheres are absent. Id. at 670. Anencephaly is often, though not always, accompanied by defects in various other body organs and systems, some of which may render the child unsuitable for organ transplantation. Id. Thus, it is clear that anencephaly is distinguishable from some other congenital conditions because its extremity renders it uniformly lethal. Id. Less severe conditions are not anencephaly. There has been a tendency by some parties and amici to confuse lethal anencephaly with these less serious conditions, even to the point of describing children as anencephalic who have abnormal but otherwise intact skulls and who are several years of age. We emphasize that the child T.A.C.P. clearly met the four criteria described above. The present opinion does not apply to children with less serious conditions; they are not anencephalic because they do not have large openings in their skulls accompanied by the complete or near total absence of normal cerebral hemispheres, which defines anencephaly. See id. The Task Force stated that most reported anencephalic children die within the first few days after birth, with survival any longer being rare. After reviewing all available medical literature, the Task Force found no study in which survival beyond a week exceeded nine percent of children meeting the four criteria. Id. at 671. Two months was the longest confirmed survival of an anencephalic, although there are unconfirmed reports of one surviving three months and another surviving fourteen months. The Task Force reported, however, that these survival rates are confounded somewhat by the variable degrees of medical care afforded to anencephalics. Id. Some such infants may be given considerable life support while others may be given much less care. See id. The Task Force reported that the medical consequences of anencephaly can be established with some certainty. All anencephalics by definition are permanently unconscious because they lack the cerebral cortex necessary for conscious thought. Their condition thus is quite similar to that of persons in a persistent vegetative state. Where the brain stem is functioning, as it was here, spontaneous breathing and heartbeat can occur. In addition, such infants may show spontaneous movements of the extremities, startle reflexes, and pupils that respond to light. Some may show feeding reflexes, may cough, hiccup, or exhibit eye movements, and may produce facial expressions. Id. at 671-72. The question of whether such infants actually suffer from pain is somewhat more complex. It involves a distinction between pain and suffering. The Task Force indicated that anencephaly in some ways is analogous to persons with cerebral brain lesions. Such lesions may not actually eliminate the reflexive response to a painful condition, but they can eliminate any capacity to suffer as a result of the condition. Likewise, anencephalic infants may reflexively avoid painful stimuli where the brain stem is functioning and thus is able to command an innate, unconscious withdrawal response; but the infants presumably lack the capacity to suffer. Id. 672. It is clear, however, that this incapacity to suffer has not been established beyond all doubt. See id. After the advent of new transplant methods in the past few decades, anencephalic infants have successfully been used as a source of organs for donation. However, the Task Force was able to identify only twelve successful transplants using anencephalic organs by 1990. Transplants were most successful when the anencephalic immediately was placed on life support and its organs used as soon as possible, without regard to the existence of brain-stem activity. However, this only accounted for a total of four reported transplants. Id. at 672-73. There appears to be general agreement that anencephalics usually have ceased to be suitable organ donors by the time they meet all the criteria for whole brain death, i.e., the complete absence of brain-stem function. Stephen Ashwal et al., Anencephaly: Clinical Determination of Brain Death and Neuropathologic Studies, 6 Pediatric Neurology 233, 239 (1990). There also is no doubt that a need exists for infant organs for transplantation. Nationally, between thirty and fifty percent of children under two years of age who need transplants die while waiting for organs to become available. Joyce L. Peabody et al., Experience with Anencephalic Infants as Prospective Organ Donors, 321 New Eng. J.Med. 344, 344 (1989).