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Anencephaly

Anencephaly is a cephalic disorder that results from a neural tube defect that occurs when the cephalic (head) end of the neural tube fails to close, usually between the 23rd and 26th day of pregnancy, resulting in the absence of a major portion of the brain, skull, and scalp. Infants with this disorder are born without a forebrain - the largest part of the brain consisting mainly of the cerebrum - which is responsible for thinking and coordination. The remaining brain tissue is often exposed - not covered by bone or skin. more...

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Infants born with anencephaly are usually blind, deaf, unconscious, and unable to feel pain. Although some individuals with anencephaly may be born with a rudimentary brainstem, which controls autonomic and regulatory function, the lack of a functioning cerebrum permanently rules out the possibility of ever gaining consciousness. Reflex actions such as respiration (breathing) and responses to sound or touch may occur. The disorder is one of the most common disorders of the fetal central nervous system.

There is no cure or standard treatment for anencephaly and the prognosis for affected individuals is poor. Most anencephalic babies do not survive birth. If the infant is not stillborn, then he or she will usually die within a few hours or days after birth. Anencephaly can often be diagnosed before birth through an ultrasound examination. The maternal serum alpha-fetoprotein (AFP screening) and detailed fetal ultrasound can be useful for screening for neural tube defects such as spina bifida or anencephaly.

In the United States, approximately 1,000 to 2,000 babies are born with anencephaly each year. Female babies are more likely to be affected by the disorder. About 95% of women who learn that they will have an anencephalic baby choose to have an abortion. Of the remaining 5%, about 55% are stillborn. The rest usually live only a few hours or days.

In almost all cases anencephalic infants are not aggressively resuscitated since there is no chance of the infant ever achieving a conscious existence. Instead, the usual clinical practice is to offer hydration, nutrition and comfort measures and to "let nature take its course". Artificial ventilation, surgery (to fix any co-existing congenital defects), and drug therapy (such as antibiotics) are usually regarded as being pointless. Some clinicians see no point in even providing nutrition and hydration, arguing that euthanasia is morally and clinically appropriate in such cases.

The cause of anencephaly is unknown. Neural tube defects do not follow direct patterns of heredity. Studies show that a woman who has had one child with a neural tube defect such as anencephaly, has about a 3% risk to have another child with a neural tube defect. This risk can be reduced to about 1% if the woman takes high dose (4mg/day) folic acid before and during pregnancy.

It is known that women taking certain medication for epilepsy and women with insulin dependant diabetes have a higher chance of having a child with a neural tube defect. Genetic counseling is usually offered to women at a higher risk of having a child with a neural tube defect to discuss available testing.

Recent studies have shown that the addition of folic acid to the diet of women of child-bearing age may significantly reduce, although not eliminate, the incidence of neural tube defects. Therefore, it is recommended that all women of child-bearing age consume 0.4 mg of folic acid daily, especially those attempting to conceive or who may possibly conceive. It is foolhardy to wait until pregnancy has begun, since by the time a woman knows she is pregnant, the critical time for the formation of a neural tube defect has usually already passed. A physician may prescribe even higher dosages of folic acid (4mg/day) for women who have had a previous pregnancy with a neural tube defect.

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Reading the Bible in the Strange World of Medicine
From Health Progress, 7/1/05 by Rosenblatt, Sr Eloise

Reading the Bible in the Strange World of Medicine Allen Verhey Wm. B. Eerdmans, Grand Rapids, MI, 2003, 407 pp., $35 (paperback)

The author of this book is the Evert J. and Hattie E. Blekkink Professor of Religion at Hope College in Holland, MI. His phrase concerning the "strange world of medicine" refers to what he sees as a lack of communication between, on one hand, people of faith who are immersed in scriptural tradition, and, on the other hand, science-oriented medical professionals whose thinking has been shaped by a philosophy of utilitarianism (aimed at goals deemed socially useful) and a technology-driven "secularization of bioethics." It is rare that ethicists concerned with medical questions ground their reflections in Scripture.

The bioethical issues surveyed here are the Human Genome Project, abortion, genetic engineering and "alternative reproductive technologies" (ART), physician-assisted suicide, care of at-risk infants, and the assignment of medical resources.

Verhey's book is essentially an appeal to the Christian community to enter the debate concerning reproductive issues. The author retrieves from their scriptural origins a set of ethical principles to guide decision making. He is concerned about the gulf between technologically based medicine and faith-based bioethical decision making.

The author has aimed his book not at academics, who are philosophical ethicists, but rather at the broader community-pastors and health care professionals who seek bridges between the world of faith and the reality of the laboratory. Verhey's approach might be described as a homiletic reflection that attempts to retrieve from the heritage of Scripture a common set of principles, such as the dignity of the person and life as God's gift.

Verhey, who is neither a physician nor a health care expert, identifies himself as a Calvinist thinker, evangelical in his tradition. A general Christian readership, including Catholics, will find his approach to Scripture consistent with theological premises concerning the dignity of the person created in the image of God, as described in Genesis, and with a philosophy of the person shaped by belief in redemption and resurrection, as described in the New Testament. Verhey insists that Scripture cannot be read literally because it often offers diverse perspectives on the same topics, depending on the time of its composition. He acknowledges that many contemporary medical questions could never have been anticipated by the writers of Scripture.

Although the author does not review the historical-critical method of Bible study, cite feminist scholarship, or explain how Christians can resist anti-Semitic interpretation of the Gospels, he does not contradict enlightened academic trends of the last 30 years.

Verhey's book shows the weakness of Christian seminar}' formation, its lack of reference to the Old Testament. The traditional Christian paradigm of creation/fall/incarnation/redemption/ resurrection, when placed like a cookie cutter over the scriptural record, results in an emphasis on the first two chapters of Genesis-and then a leap to the New Testament. Verhey does discuss a passage in Job and several Psalms, but he mostly overlooks the narrative tradition of the Hebrew Scriptures, including the stories about healing (e.g., the bronze serpent and the healing of Naaman the Syrian, in Numbers; and the Elijah and Elisha traditions, in 1 and 2 Kings). It is unlikely that Verhey's book would resonate with Jewish readers involved in health care.

The first 150 pages of Reading the Bible in the Strange World of Medicine are drawn from seminary-style lectures on the biblical theology of the person, reading Scripture, engaging in prayer, the discerning community, and the sources for a spirit of religiously inspired compassion. sections could be used as resources for a mission-effectiveness office in a Catholic hospital, faith-based texts for units in a clinical pastoral education program, or homiletic suggestions for a hospital chaplain. The book's second half is very helpful in explaining to laypersons the scientific procedures and fundamental values that would be involved in the genetic engineering of a "perfect child."

The author does a generally sympathetic analysis of the Catholic position on abortion, commenting at length on Margaret Parley's analysis of "good faith" and "bad faith" on both sides of the debate. Verhey endorses the ethical principles regarding human sexuality; fidelity in marriage; and the integration of genetic parenthood, gestational parenthood, and responsibility for children's upbringing as described in the Congregation for the Doctrine of the Faith's Instruction on Respect for Human Life in Its Origin and on the Dignity of Procreation of 1987. He proposes the existence of alternative ethical positions consistent with a Scripture-based ethic, such as exceptions for abortion in cases of rape, incest, or a diagnosis of anencephaly-although not for a diagnosis of Down syndrome, in which cases, Verhey argues, "the community must share the burdens of caring for such children."

Verhey's chapter on abortion is the one that best integrates Scripture as a foundation for ethical principles; it effectively uses passages about women in the ministry of Jesus. A weaker effort is the author's treatment of ART; he provides explanations of the various scientific procedures involved, but gets mired in repetitive denunciation of the commercialization and commodification of embryos. A chapter that challenges the premises justifying physician-assisted suicide appeals to the principle of life as God's gift. On the other hand, a discussion of Judas's suicide in Matthew and Luke is uninformed by recent New Testament scholarship. The final chapter, called "The Good Samaritan and Scarce Medical Resources," is a humane, coherent essay that I could imagine reading before attending a meeting in which a hospital board of trustees was to discuss allocation of the budget.

Some cautions should be kept in mind in using this book. Verhey assumes that a prayerful reading of and reflection on the same biblical texts will unite the community of faith around bioethical questions and result in harmonious discernment. However, the hurly-burly world of health care is different from the comparatively serene world of the pulpit, the retreat center, and the denominational college classroom. Increasingly, the people who form the decision-making bodies in U.S. bioethical debates represent different scientific, educational, philosophical, and political persuasions, as well as different religions, different medical and cultural histories, and different ethnicities. We find ourselves in a health care setting that affirms diversity. The question is, how much diversity can this book speak to and support?

Sr. Eloise Rosenblatt, RSM, PhD, JD

San Jose, CA

Copyright Catholic Health Association of the United States Jul/Aug 2005
Provided by ProQuest Information and Learning Company. All rights Reserved

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