National Catholic Register
by Nancy Valko, Register Correspondent Sunday, Nov 10, 1996 2:00 PM Comment
EVERY YEAR in the United States, approximately 800 babies are born with a birth defect known as anencephaly. It is a condition where, early in pregnancy, an error in development occurs which prevents the top portion of the brain and skull from forming correctly. Such babies have only a brain stem in place of the entire brain and lack part of the skull. Despite the severity of the defect, about half of such babies are born alive. However, almost all die shortly after birth, with only a rare few living months or years.
In years past, anencephaly was not detected until birth. However, with the advent of routine ultrasound and a newer blood test for the mother called AFP screening, the condition can often be detected during pregnancy.
Although abortion for unborn babies with terminal illness or disabilities has long been condemned by the Catholic Church, in the past few years some ethicists have developed a rationale by which pregnancies involving babies with anencephaly could be terminated by inducing labor as soon as the diagnosis is made.
Such terminations are called “early inductions of labor”rather than abortions by proponents, as anencephaly is usually not discovered until midway through the pregnancy. As justification, these ethicists have cited the possibility of difficulties during labor and delivery, the emotional trauma of the parents, and the apparent absence of mental development in babies who have the fatal condition. Reports of such terminations occurring at Catholic hospitals have prompted anger in the pro-life movement and calls for reexamination of the issue by other ethicists and doctors.
In an ironic twist, at the same time these ethicists were proposing ending anencephalic pregnancies prematurely, the Council for Ethical and Judicial Affairs of the American Medical Association (AMA) proposed the continuation of such pregnancies at the parents’ discretion so that the babies’organs could be harvested shortly after birth and before death. Earlier this year, the council reluctantly withdrew its proposal after strong opposition from AMA members, legal experts, pro-lifers, and parents of infants with anencephaly. These critics argued that taking organs before death should remain legally and ethically forbidden.
In a definitive statement issued Sept. 16, 1996 and titled “Moral Principles Concerning Infants with Anencephaly,”the National Conference of Catholic Bishops (NCCB) Committee on Doctrine condemns both practices. The NCCB statement reaffirms the Church’s position that “it can never be morally justified directly to cause the death of an innocent person no matter the age or condition of that person.”
Specifically, the Committee on Doctrine states: “The fact that the life of a child suffering from anencephaly will probably be brief cannot excuse direct causing death before ‘viability'(the ability of a baby to live outside the womb) or gravely endangering the child’s life after ‘viability’as a result of the complications of prematurity.”
As the statement points out, while it is permitted to treat a life-threatening pathology of the mother even when this has the unintended side-effect of causing the death of her child, “[a]nencehpaly is not a pathology of the mother, but of the child, and terminating her pregnancy cannot be a treatment of a pathology she does not have.”
Because the child has an ultimately fatal condition, the statement says that babies with anencephaly “should be given the comfort and palliative care appropriate to all the dying” but that “extraordinary means to prolong life”can be foregone.
The statement also recognizes that while a wish to help other children by donating organs from babies with anencephaly is commendable, “this may never be permitted before the donor child is certainly dead.”
In the August 1996 issue of the Linacre Quarterly, Father Kevin O’Rourke, director of the Center for Health Care Ethics at St. Louis University, reversed his previously held opinion that premature delivery for unborn babies with anencephaly was justified. He now states that “because intervention in the pregnancy of an anencephalic infant results in a direct killing of an innocent human being, the only suitable, ethical opinion seems to be to allow the pregnancy to go to term, …”thus concurring with the NCCB Committee on Doctrine’s conclusions.
Prenatal Testing and Anencephaly
With the advent of prenatal testing, particularly AFP or “triple screen”testing of the mother’s blood, more and more parents are faced with the possibility of learning before birth that their baby has anencephaly or other birth defects. In 1994, the American College of Obstetricians and Gynecologists officially recommended that a “triple screen”test of the mother’s blood be offered to pregnant patients of all ages.
This implies a legal mandate to practicing physicians who cannot afford the liability of not offering such a test after a national recommendation has been made. This has resulted in “triple screen”testing becoming a common routine during pregnancy.
The “triple screen”test is done around 16-18 weeks into pregnancy when levels of certain substances produced by the baby can be detected in the mother’s blood. An abnormally high result suggests such conditions as anencephaly or spina bifida (an opening in the spine). An abnormally low result primarily suggests Down’s syndrome.
However, the rate of false-positive results is quite high and the vast majority of women with abnormal test results will be carrying perfectly healthy babies. Further testing is supposed to be recommended when an abnormal result is obtained, but there have been reports of mothers being offered the option of abortion after only the initial test.
Routine “triple screen”testing remains controversial. The anxiety engendered in pregnant women by abnormal but usually false-positive test results, the financial cost of testing all pregnant women as well as the costs of retests, and the implicit support for aborting so-called “defective” infants have spawned criticism of this policy. Supporters of the policy point to the potential cost savings of abortion over the costs of caring for infants with severe birth defects and the parents’ right to know all information currently available as justifying the policy.
As the 1987 Congregation for the Doctrine of the Faith’s document Donum Vitaemakes clear, the Churchs position is that prenatal testing which does not pose disproportionate risks to the unborn child or mother is permitted if the intention is not to abort but rather to safeguard or heal the child.
Nancy Valko, R.N., is based in St. Louis, Mo.
National Catholic Register News
BY Nancy Valko
November 10-16, 1996 Issue | Posted 11/10/96 at 2:00 PM
In 1992, David and Anne Andis had a little girl with anencephaly whom they named Emma. Although an ultrasound showed the possibility of anencephaly only 10 weeks into the pregnancy, David and Anne, who are not Catholic, made the decision not to abort but found little support or information on dealing with their family’s crisis.
Although Emma lived only five days after birth, the Andises found that being able to know and love Emma during her short life was a meaningful and healing experience for them and their family. In response to their situation, they helped to start the Anencephaly Support Foundation to help other parents, families, and friends deal with the physical and emotional challenges of having (and losing) a baby with anencephaly. They now give such practical tips as the best kind of bottle to use if the baby can suckle and how to care for the skull defect as well as linking parents with other parents who have had children with anencephaly.
David and Anne are also spearheading an effort to establish a national birth defects registry and federal funding to study the causes of birth defects, hoping this information will lead to some answers and help prevent future babies from dying. Currently, low levels of the vitamin folic acid has been linked to the incidence of anencephaly but further research is considered warranted.
The Andises maintain an Internet site and also recently produced a videotape called The Anencephalic: A Suitable Donor? which deals with the controversial subject of using anencephalic infants as organ donors before death.
The Anecephaly Support Foundation can be reached by the Internet address http://www.asfhelp.com or by the toll-free phone number 1-888-206-7526.
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