It is a soul-searing moment when parents are told that their child will die. Whether this occurs before or after birth, the anguish of the parents is very real and there is a natural desire on the part of everyone involved to alleviate this suffering in any way possible.
While a whole arsenal of emotional and physical help can be mobilized to support both parents and child during the dying process of a child who is already born, such options are more limited when a lethal condition is discovered before birth.
Anencephaly has long been considered one of the most tragic of such lethal conditions. The lack of major portions of the brain and skull usually results in the death of such an infant either before birth or shortly afterwards, and there is no treatment to cure such a condition. Although prenatal testing is sometimes erroneous, the diagnosis is usually made in the second trimester of pregnancy, and abortion is the typical recommendation to supposedly help such wounded parents.
In 1982, I had a friend who faced such a situation. "Mary" (not her real name) had an ultrasound suggesting anencephaly when her unborn child was at twenty-one weeks gestation and she endured twenty-eight hours of hard labor with a prostaglandin-induced abortion before her baby was delivered and died. Mary tried hard to put the tragedy behind her and decided to tell most of her friends that she had a miscarriage rather than an abortion. However, as she confided later, she half expected to be somehow punished when she later had a son, and it took several months after his birth before she could truly believe that her son was healthy. Eevery Christmas she secretly hangs an ornament for her dead first child.
Catholic Ethics and Anencephaly In a 1993 article, "Anencephaly and the Management of Pregnancy," Sr. Jean deBlois, C.S.J., then senior associate for clinical ethics at the Catholic Health Association, proposed anencephaly as a case where "the pregnancy may be terminated at any time." Although Sr. deBlois acknowledged that "there is no life-threatening maternal pathology," she cited the increased physical risks during labor and delivery, the "emotional trauma suffered by a couple upon diagnosis of anencephaly," and the lack of mental development in the baby as justification for "inducing labor to end the pregnancy."1
Employing the principles of proportionality and double effect, she maintained that "the resulting fetal death is indirect" and thus not an abortion. Sr. deBlois further stated that because "human life involves more than simply biologic life" and infants with anencephaly lack "psychological, social, and creative capacities," such babies "can never acquire the quality of viability, properly understood." Thus, she maintained, "once the diagnosis is made, there seems to be no purpose in maintaining the pregnancy."
Anencephaly was thus singled out as a special case from other lethal birth defects because of the presumed lack of mental function. According to Sr. deBlois' rationale, Catholic hospitals would then be ethically allowed to perform early induction delivery-an acknowledged abortion procedure used for terminating babies with birth defects2 - as a kind of termination of life support rather than abortion.
Whatever the semantics, Sr. deBlois' position was a radical departure from the Church's condemnation of direct termination of pregnancy based on the condition of the unborn baby. Especially because some ethicists consider anencephaly as analogous to the controversial "vegetative state," this position unfortunately also furthered the contention that a presumed lack of mental function overrides the obligation to provide for the basic needs of a person by justifying even the interruption of a process as natural as pregnancy.
However, in 1996, the U.S. bishops issued a statement titled "Moral Principles Concerning Infants with Anencephaly" that declared, "it is clear that before 'viability' it is never permitted to terminate the gestation of an anencephalic child as the means of avoiding psychological or physical risks to the mother. Nor is such termination permitted after 'viability' if early delivery endangers the child's life due to complications of prematurity.... Only if the complications of the pregnancy result in a life-threatening pathology of the mother, may the treatment of this pathology be permitted even at a risk to the child, and then only if the child's death is not a means to treating the mother."3
In his second edition of A Primer for Health Care Ethics, published in 2000, Fr. O'Rourke changed his earlier position and wrote that "the application of the principle of double effect oes not seem to justify the early delivery of anencephalic infants. (This conclusion is a reversal of the opinion of O' Rourke and deBlois cited above.)"4
Theory and Consequences Despite an apparent emerging consensus on the issue, the matter of early induction deliveries of anencephalic infants is not considered closed by some ethicists.
In a July 2003 article titled "Early Delivery of a Fetus with Anencephaly," Fr. Norman Ford theorizes that waiting until thirty-three weeks (almost two months before term) to induce delivery of anencephalic infants meets ethical standards. While prematurity is considered delivery before thirty-seven weeks, Fr. Ford maintains that the cause of these infants' deaths is anencephaly, not prematurity since most normal babies survive when delivered at that stage even though the deaths of anencephalic infants are anticipated. He stated that these early inductions are motivated by "a compassionate desire to alleviate her [the mother's] distress and minimize potential health risks for the mother" and that "by this stage the mother's duty of reasonable care for her fetus would have been satisfied."5
Some ethicists in Catholic hospitals would go even further. Two October 2003 articles, one in the Catholic Anchor, the Anchorage archdiocesan newspaper,6 and one in the National Catholic Register7 report early induction deliveries of infants with other "anomalies incompatible with life" in Catholic hospitals as early as twenty-four weeks into pregnancy, the commonly accepted limit of viability even with treatment. The ethicists involved defend the early inductions as consistent with directive 49 of the U.S. bishops' Ethical and Religious Directives for Catholic Health Care Services that says, "For a proportionate reason, labor may be induced after the fetus is viable."8 However, as Maria Wallington, M.D., director of ethics at Providence Alaska Medical Center, told the Catholic Anchor newspaper, "The ERDs talk about proportioned good and then they don't talk about how you decide that."9
In a later article in the January 23, 2004, edition of the Anchorage Daily News, Dr. Wallington continued to defend the early inductions: "The practice relieves suffering, Wallington said. Imagine how hard it would be for a pregnant woman to face constant questions about a baby she knows will die."10
The development of policies to allow early-induction deliveries of babies with presumed lethal defects was a shock to many, especially those in the pro-life movement. In January 2004, Alaska Right to Life held a press conference to protest these early inductions as direct abortions and featured a mother of a child with such lethal defects who said she had no regrets about rejecting the option of early termination of pregnancy. Her baby lived for thirty-two days.11
Risks of Early Induction of Labor While induction deliveries are not uncommon and can even be lifesaving for the mother or baby, inducing delivery two to four months early is a situation that would certainly not be contemplated for a healthy baby and a healthy mother.
Induction itself carries serious risks to both mother and infant. As a May 2003 editorial in the American Family Physician journal states, even elective induction delivery near or post term "is not without potential risks, including iatrogenic prematurity, uterine hyperstimulation, nonreassuring fetal heart-rate tracing, and greater likelihood of operative delivery [C-section], shoulder dystocia, and postpartum hemorrhage."12
Despite the advances in prenatal diagnostics, prenatal testing is still not 100 percent accurate, and there exists a risk of misdiagnosis that can and has resulted in the loss of a less damaged or even healthy baby by early termination of pregnancy.13 Even when induction is considered necessary in medically emergent situations such as severe preeclampsia in the mother, every effort is made to give the baby as much time in the womb as possible to lessen the usual risks of prematurity.
Emotionally, the diagnosis of a lethal or any serious anomaly in an infant is a distressing moment for parents whether this occurs before or after birth. There is a normal grieving process as the parents face the reality of the loss of the "perfect baby" they had imagined. When a birth defect is deemed lethal, parents must also eventually prepare for the death of that child. When such a baby is still in utero, there is a natural tendency to want to "get it over with" rather than endure well-meaning comments from strangers and imagine a sadly different labor and delivery weeks or months in advance. However, the natural grief of losing a child cannot be avoided, and it is by no means clear that waiting an additional two to four months before the pregnancy is terminated rather than waiting for natural delivery will substantially decrease maternal distress. To my knowledge, supporters of early induction have not cited studies supporting their contention that early induction can be psychologically beneficial.
As with any bereavement, the emotional distress of the parents does not end with the death of their infant and, as my friend Mary's situation illustrates, the intentional early delivery can add even more emotional trauma to an already tragic situation.
1 Sr. Jean deBlois, C.S.J., "Anencephaly and the Management of Pregnancy," Health Care Ethics USA 1.4 (Fall 1993), reprinted in A Primer for Health Care Ethics: Essays for a Pluralistic Society, eds. Sr. Jean deBlois, C.S.J., Rev. Patrick Norris, O.P., and Rev. Kevin D. O'Rourke, O.P. (Washington, D.C.: Georgetown University Press, 1994) [Back]
.2 Jan Nissl, R.N., "Induction Abortion," in Health Library, Northwestern Memorial Hospital, Chicago (Boise, ID: Healthwise, Inc., 2003), http://health_info.nmh.org/Library/HealthGuide/IllnessConditions/topic.asp?hwid=tw2562. [Back]
3 National Conference of Catholic Bishops (U.S.), Committee on Doctrine, "Moral Principles Concerning Infants with Anencephaly," Origins 26.17 (October 10, 1996): 276. [Back]
4 Rev. Kevin D. O'Rourke, O.P., "Early Delivery of Anencephalic Infants: Ethical Opinions," in A Primer for Health Care Ethics, ed. idem., 2nd ed. (Washington, D.C.: Georgetown University Press, 2000), 311-315. [Back]
5 Rev. Norman M. Ford, S.D.B., "Early Delivery of a Fetus with Anencephaly," Ethics & Medics 28.7 (July 2003): 3. [Back]
6 John Roscoe, "Providence Is Refining Its Policies on Induced Labor," Catholic Anchor (Anchorage, AK), October 10, 2003. [Back]
7 T. Szyszkiewicz, "Induction Procedures Raise Moral Dilemma," National Catholic Register, October 19-25, 2003. [Back]
8 United States Conference of Catholic Bishops, Ethical and Religious Directives for Catholic Health Care Services, 4th ed. (Washington, D.C.: United States Conference of Catholic Bishops, 2001). [Back]
9 Roscoe, "Providence Is Refining Its Policies." [Back]
10 Lisa Demer, "Right-to-Lifers Target Providence," Anchorage Daily News, January 23, 2004. [Back]
12 Elizabeth G. Baxley, M.D., "Labor Induction: A Decade of Change," American Family Physician 67.10 (May 15, 2003): 2076. [Back]
13 Peggy O'Mara, "Prenatal Testing and Informed Consent: Base Your Choices on the Evidence," Mothering 120 (September-October 2003). [Back]