Description: Every year 12,000 unborn fetuses are diagnosed with a missing brain and parts of their skull, a birth defect known as anencephaly. 2,000 are brought to term; none will survive more than a few days. These unborn infants, if brought to term, could save the lives of many infants in need, and could have the ability to give life without ever experiencing life for themselves.
Every year, 12,000 unborn fetuses are diagnosed with a missing brain and parts of their skull, a birth defect known as anencephaly. 2,000 of those are brought to term, none of which will survive more than a few days (Shewmon). Even though these infants will never grow and experience human consciousness, current laws prohibit their families from donating their organs to children whose lives may otherwise be saved. If this solution seems so obvious or helpful, why don’t people jump at this idea? This essay discusses the ethical issues involving live anencephalic organ donation and the concern for changing the law.
Anencephaly is an incurable, fatal medical condition and one of the most serious neural tube defects. Anencephaly is characterized by a lack of brain development beyond brain stem activity. The cerebrum, the cerebellum, and often the bones of the skull are missing; however, there is still brain stem activity enabling the heart and lungs to function for a short period of time. Once this condition has been detected, ninety five percent of mothers exercise their rights to abort these fetuses, knowing the certain fate that would follow delivery (Shewmon). The mothers who take these pregnancies to term face laws that govern the parent’s choices relating to the status of the infant.
Anencephalic babies have fully or partially functioning brainstem tissue. Because of this, they are able to maintain some unconscious activity, including the functions of the heart, lungs, kidneys and intestinal tract, as well as reflex actions. They may be able to breathe, suck, engage in spontaneous movements with their eyes, arms and legs, respond to harmful stimulation with crying; however their cry is more of a faint squeak. These infants may be able to mimic facial expressions of a healthy child, but will never have any recollection of what they are doing, even if they could potentially grow up. Because of this activity it may appear that anencephalic infants may be conscious, but sadly they are not and these actions are only reflexes. The lifespan of an anencephalic baby is generally extremely short. Many die within a few hours, less than half survive a day and fewer than ten percent survive more than a week (Botkin 250-6).
Organ Donation: there is a need, not just a desire
The medical field has come so far with many incredible procedures and surgeries, with one of the most exciting being organ donation. Organ donation has been able to save millions of lives and give hope to billions, but many find false hope with the growing organ shortage and increasing need. Eighteen people die each day waiting for a suitable organ, as 144 are added to the national organ transplant list (“Organ Donation Statistics”). In order for someone to obtain an organ transplant, he/she must be placed on the national organ transplant list and then wait for someone with a compatible organ to die. More than 119,000 people are waiting for an organ transplant in the United States, making it very challenging to find this compatible donor, but for pediatric patients it is nearly impossible (“Organ Donation Statistics”). In order for a transplantation to work efficiently one would need organs of a similar size; for that reason another child would need to die in order for the sick child to receive a transplant. Five hundred infants need a heart, five hundred infants need a liver, and four to five hundred infants are in need of a kidney. Thirty to fifty percent under two years of age on the waiting list die before ever receiving a transplant, and forty to seventy percent die before transplant in pediatrics overall (“The Use of Anencephalic”). And these estimates are considered underestimates of the shortage for pediatric organs. Many children in need of organs never make it on the list because of this major organ shortage resulting in these infants not having high enough priority to receive an organ or because they do not live long enough to have their names entered. The difficulty in obtaining suitable numbers of infant cadavers with supported vital functions by a life-sustaining treatment have led some physicians to search for alternative sources of organs. This is why some physicians and parents have proposed the idea that parents of anencephalic infants be allowed to donate the child’s organs for transplantation.
This is where anencephalic infants come in. These days the types of accidents that result in a death where organs would suitable for transplantation, such as automobile accidents, are becoming more and more unlikely due to the growing technology regarding safety for infants in cars. Of course it is unrealistic to say that the use of anencephalic infants as organ sources will solve the problem of organ shortage in children, or even come close to solving it. Anencephalic live births are uncommon and becoming more scarce with miscarriages and abortions due to prenatal diagnoses. Anencephalics may not be a complete solution, but can be a worthwhile option when none others exist. If anencephalic babies were to donate, taking into careful consideration pregnancies aborted, those stillborn, those born large enough to obtain viable organs, those parents willing to donate their child’s organs and the advancements of technology, twenty five kidneys, twelve hearts, and seven livers each day could help save suffering children from growing up in a hospital, allowing them to live a potentially full and healthy life free of machines and outside hospital walls (Shewon, Capron, Peacock, and Schulman 1773). Why wouldn’t someone want to save them? Saving just one life would make a difference.
What does it take to be a hero? How many lives does one have to save? If not hundreds or thousands, what if just one could be saved? Is this not a worthwhile exploration for one dying infant to save the life of another so they may have a chance to grow up outside hospital walls? How many lives need to be saved before a law can get changed? While estimates of anencephalic births generally range from 1,000 to 2,000 each year, some critics argue that too few children would benefit from the organs of anencephalic infants. Most anencephalic infants are stillborn, and many organs from some live born infants are not fit for transplant; as a result, the number of children who could benefit would be less than 1,000. Should this apprehension in the numbers of benefiting children from anencephalic infants be a concern or barrier in permitting anencephalic organ donation? This question can be justified with a utilitarian perspective with the results justifying the means, because the results increase aggregate pleasure and happiness in society. More importantly, even assuming that there would only be a small number of infants that would benefit with long-term survivals each year, it is unclear why this would not suffice to permit the donation of anencephalic organs. Between the many different goals heath care providers have, saving lives is the utmost important. How many lives does it take to be relevant?
Why Not Already?
The dilemma is: if one waits for the cessation of all brain stem activity before removing the anencphalic’s organs, the organs would be severally damaged and unsuitable for transplantation. Almost all 50 states have adopted either The Uniform Definition of Death Act (UDDA) laws or another legal form of brain-related death. The UDDA defines death as either “irreversible cessation of circulatory and respiration functions” or “irreversible cessation of all functions of the entire brain, including the brain stem” (“Uniform Declaration of Death”). By the time brain death or respiratory death has been declared the organs will have undergone ischemic damage, or restriction in blood supply to tissues, causing a shortage of oxygen and glucose needed for cellular metabolism, making them unsuitable for transplantation. This occurs because cardiovascular and respiratory functions deteriorate gradually in anencephalic infants before their death. The use of life support does not improve the chance of successful organ donation from anencephalic infants while they are still “legally” alive. While organ function can be preserved on life support, as brainstem function worsens rapidly, multisystem organ failure begins before death. This is why the need for organ donation while the infant is legally alive would need to occur in order for a more successful transplant. This begs the question: are anencephalic infants brain dead?
Consciousness: Why anencephalic infants are different
If an organism is able to breathe and circulate blood, many assume it to be alive. What if this same organism is missing all or most of its brain, and consequently is deaf, blind, and wholly unconscious. What adds to the definition of human, or of being whole? When thinking of an animal or plant life, it seems pretty obvious, but within a human life it is extremely difficult.
The medical definition of consciousness is “The state of being aware, or perceiving physical facts or mental concepts; a state of general wakefulness and responsiveness to environment; a functioning sensorium”(Stedman’s Medical Dictionary). By this definition anencephalic infants are not nor ever will be conscious. This is what makes anencephalic infants so different from any other patient; therefore there would be a need to craft a new definition of personhood. Can someone be classified as a human being if they never experience consciousness, and does this entitle them to human rights? Dr. Robert J. Levine, Yale professor of medical ethics, told the New York Times that an anencephalic “has more in common with a fish than a person” (Chartrand). Where comparing these infants to a “fish” may be a little harsh, there is great controversy on whether we classify these infants as humans. Are anencephalic infants considered unconscious because of their age or because of their lack of most of their brain? “Consciousness requires a sophisticated network of highly interconnected components, nerve cells” says one researcher, who says that any of the circuit elements necessary for consciousness are in place by the third trimester (Koch). Although a newborn does not have self-awareness, the infant mentally can understand “complex visual stimuli” and can recognize sights and sounds around him/her. The newborn can distinguish faces, voices, and even mimic a motion such as sticking out his/her tongue like their father’s, proving that the baby has “some basic level of unreflective, present-oriented consciousness” (Koch), making them very different from anencephalic infants.
This idea of consciousness is what makes anencephaly a very controversial topic, raising more questions than it does answers. Many have argued against the harvesting of organs from anencephalic infants and favor the laws that support the “dead donor rule.” This argument objects to sacrificing a life in order to harvest its organs for the sake of another individual’s life. However, in the case of anencephaly, the difference may be that these infants never had nor ever will possess consciousness, and therefore life or personhood. Brain death is defined as the irreversible loss of all functions of the brain, including the brainstem. The most common cases of brain death are coma, absence of brainstem reflexes, and apnoea. A patient determined to be brain dead is legally and clinically dead.
The dead donor rule exists to ensure that one person’s life will not be taken to save another. Would the essence of this rule be compromised by permitting the donation of anencephalic organs? Some critics oppose parental donation of organs from anencephalic infants based on their belief that it would open the door to abuses of other people. Creating this exception to the dead donor rule to use anencephalic organs may result in further exceptions to enable organ removal from seriously disabled or mentally ill people. For example, many fear that individuals who are in a persistent vegetative state, infants with seriously disabling conditions and elderly adults with severe dementia would be considered acceptable organ sources. The argument implies that any change in policy can be construed as entering a “slippery slope” situation. One of the reasons this slippery slope risk is not a serious one, if society permits the donation of anencephalic organs, is that the condition of anencephaly is unique among infants. It is a condition that can easily be diagnosed prenatally and it is not like any other disease or condition, therefore it cannot be compared. Infants with other severely disabling conditions have at least some degree of consciousness, as do elderly people with severe dementia, and these patients have interests, including staying alive. Patients who are in a persistent vegetative state are no longer conscious, while they once were conscious and therefore had previously established an identity and a set of interests. Because anencephalic and other seriously ill patients differ on the very factor that justifies parental donation of organs from anencephalics, there is little similarity between organ removal from anencephalics and organ removal from other people with severely disabling conditions.
Without medical help, the anencephalic infant’s heartbeat and spontaneous respiration will become only a temporary occurrence that will stop within a few days of birth. So is this infant a “living being” or person? Biologically the infant is alive, but dying, and there is no cure to this disease due to the small amount of brain activity in the brain stem, which controls respiration and the heartbeat. This condition is what makes anencephaly so controversial, because the limited involuntary organ function at the time of birth creates the “illusion of life.” The word “illusion” is used because these anencephalic infants do not have properly functioning cerebral hemispheres, not allowing them to ever experience consciousness. These infants never have thoughts, feelings, sensations, desires or emotions. They do not have any social interaction, memory, pain, or even suffering. These infants can swallow by activating a right reflex, but if someone were to feed the infant, they would have no feelings of being hungry or full, because these are sensations that would occur in the brain. Further, due to their lack of proper brain development, they cannot develop as healthy humans past several hours, or perhaps days. These infants are alive only by the minimum requirements of being considered a living organism. The biggest problem with the ethical decision to donate the organs of live anencephalic infants is that they have not and will never reach a time that they can make the decision to donate organs or not. If someone lives to the point of creating a living will or sharing with others their choice to donate, there is no problem with harvesting the organs. Many who view the infant as a helpless, voiceless person, who is being taken advantage of, often disagree with organ donation.
Loma Linda: Why live anencephalic infants should be considered
In 1987, Loma Linda University Medical Center in California agreed to deliver anencephalic infants and to keep them on respirators in order to salvage their organs for donation to infants in need. For patients of all ages there is a greater number of patients in need of organs than are available; this shortage is very prominent in young infants and children in need of organs. There are currently over 120,000 men, women and children on the national organ transplant waiting list, and one name is added every 10 minutes. There are approximately 1,851 pediatric patients on this list, many of whom will not receive a transplant (“Organ Donation Statistics”).
Newborns and other young children can usually benefit from organs taken from other children of similar size. However, there is a large shortage of pediatric organ donors. The sort of injuries, such as car accidents, that can destroy the brain while leaving the other organs intact for transplantation are much rarer in infants than in adults and other children. So is the uncertainty of diagnosis of brain death, as it is more difficult in pediatric patients than adults, using a CT angiography for brain death diagnosis.
The Center also announced plans to accept other anencephalic infants with the goal of harvesting their organs for donation either at Loma Linda or elsewhere. A Loma Linda official said she does not know of any other hospital in the nation that sustains the lives of anencephalic infants in order to use their organs. Most anencephalic infants die within a month of birth. In 1994, the hospital had continued to admit patients with this condition and prepared the neonates for post-delivery transplantation of organs harvested from fetuses. For any parent, losing a child is a devastating experience, especially knowing that you had no way of saving your child. This is why many parents of anencephalic infants pose the question of donating as many of their child’s organs that their child would never be able to utilize to its fullest potential. These parents want to donate the organs to help sooth an emotional loss and to have the satisfaction that their child’s life and subsequent death positively impacted somebody else’s life, giving them a life outside of hospital walls, the ability to laugh and play free of machines to help keep them alive. An official at the Loma Linda hospital said, “[the] decision to accept anencephalic infants as a matter of policy was prompted by more than 50 requests in the last year from parents of anencephalic infants who wanted their infants to be born so that their organs could be donated to other needy infants.” One parent said, “This is a first step toward what we want. . . . All I wanted was for doctors to use the baby. But none of them would do it, not because they didn’t want to, but because they couldn’t under current brain-death criteria” (Sahagun).
Who is the permitting of anencephalic infants saving?
If laws permitted the donation of anencephalic organs hundreds or even thousands of dying infants could be saved. It is hard not to argue that society wants to try to save as many lives as they can, but still must do it in an ethical way. If a law were to be changed one could look at it as saving infants in need by giving them organs or preventing the anencephalic infant and the child’s family from suffering. Ending the life to save another, even if the donor’s life will end shortly, rubs people the wrong way, and understandably so. If the desire for anencephalic infant organs were presented by parents of children in need of organs and physicians, then the motivation for donation would be unethical. However, where anencephalic infant donation stands out is in the overwhelming amount of parents who want to donate their infant’s organs to save the life of another. The birth of an infant without the ability to grow and experience human life is very sad, and most likely unimaginably difficult to deal with, but some parents would take comfort in the fact that their child helped save others. An example is the case of Baby Theresa whose parents continuously fought the Florida Supreme Court for the legal right to donate their child’s organs (“Theresa Ann Campo Pearson”). These parents found out they were having an anencephalic infant, and intentionally dismissed the decision to abort, since they thought they would be able to donate the infant’s organs. Unfortunately, the judge said, “I can’t authorize someone to take your baby’s life, however short, however unsatisfactory, to save another child” (“Theresa Ann Campo Pearson”). In this case, one can argue that the means can justify the end, and if the court ruled that Theresa could indeed donate her organs, her family could have saved the life of another child and avoided the pain of going through a pregnancy in which their child would not be able to survive. Using the utilitarian ethical perspective as a means to justify the ends, it is easy to see why many would be in favor of donation. A mother willing to carry a child to term for donation of the child’s organs is undoubtedly selfless.
A Parent’s Right
Most parents want the best for their child and could never dream of harming them. The pain and suffering of the parents of an anencephalic infant is unimaginable unless one is in their situation, and this is why many may want to donate their child’s organs to create some good out of an awful situation. This loss of the anencephalic infant’s life is a loss for their family and for others dear to them, as the value of the anencephalic’s life is a value only for others because these infants will never experience human life for themselves. The Uniform Anatomical Gift Act or UAGA requires consent from donors before or when they want to donate. Section 4 of this act allows “an anatomical gift to be made on behalf of an individual by that individual’s agent or a parent, if that individual is an emancipated minor or by a guardian” (Crossley). As parents of an infant should they have the right to decide whether or not to donate the child’s organs while the child is still living? If the parents of the anencephalic infant made the decision to bring them to term whether or not it was for donation of the infant’s organs, should these parents have the right to make decisions on behalf of their child and is one of those decisions to choose to not artificially sustain the life of the infant and to harvest the organs? The Age of Legal Capacity Act states that a parent has the right to decide or override decisions involving medical treatment as long as it is not harming the child. In addition, people are able to donate non-life sustaining organs, such as kidneys, to others in need (Crossley). Therefore, these provisions set a precedent for parents deciding whether to donate their infants’ organs. In other words, under current law it would seem that a parent may be permitted to authorize the harvesting of a kidney from an anencephalic infant for the benefit of another. Parental rights exist in both cases, but the law currently draws a line limiting those rights in order to protect the child. But if that child can never live the question remains should the law revert to the parents to serve the greater good or the ultimate benefit of the child? Is it unethical to deprive a child who will never be conscious of a day or even a week, if it ends up saving the life of at least one other child, giving this other child a chance, where this anencephalic infant has none?
The views of protecting the child and allowing the parents to make an ethical decision regarding the life of the anencephalic infant are considered opposite. Even if donation of anencephalic organs were to be legalized, the decision is not only left to the parents, because they are not allowed to truly decide, due to the Americans with Disabilities Act and the Emergency Medical Treatment and Active Labor Act (“Uniform Declaration of Death”). The ADA and EMTALA attempt to protect the life and regulate the treatment of all individuals with disabilities by stating that if a person is in need of emergency care they must be treated (Crossley). These laws do a great amount of good, but conflict with a parent allowing their anencephalic infant to die, with or without the decision to donate the organs. If a patient had already made a living will, then there would be no problem. In looking to protect the interest of the child, if the infant will not feel any better or worse by living a few days longer or not living at all or possess any interests at all, is there still an interest to protect? Or if these infants can never voice an opinion of their own, and indeed have interests is it then the parents’ right to make life decisions on their behalf?
As this practice of organ donation becomes more common, many people believe that certain safeguards need to be put in place to regulate its occurrence. In the United States this fear of “wanting” people to die to save others is irrational because of the many laws governing just what doctors can and cannot due revolving around organ donation, and will never compensate someone’s medical care if they happen to be a donor. Many donate out of the goodness of their heart and their desire to help others. Organ donation is an amazing gift of life that, even though starting with a death, is an incredible milestone that must be willing to be shared. Doctors want the best for their patients and will look out for the child’s and the parent’s interest. Doctors have the right to suggest medical treatment and give their opinions; however, they do not have the final say. Many in favor of anencephalic organ donation believe that donation of the child’s organs should only occur if the discussion of donation was introduced by the parents of the child, and not if started by members of the health care system. This is important to create this reassurance that the parents of the anencephalic infant are the ones that want to donate out of their heart, not the pressure from doctors or outside sources. Also, many believe that the donation should not occur without the fully informed consent of the parents of the anencephalic child.
By protecting the interests of those who donate organs, the dead donor rule gives those who may choose to become organ donors reassurance that their lives will not be shortened by the removal of their organs for the benefit of someone else in need of those organs. However, the donation of anencephalic infants will not go against the rule’s role of reassurance. People who are debating whether or not to become organ donors will never become anencephalic. So, if anencephalic infants become able to donate their organs with an exception to the dead donor rule, there will still be the reassurance that all organ donors will receive equal protection under the dead donor rule. The dead donor rule reflects a high value on life and society emphasizes that all life must be respected. While respect for life is extremely important, it is not clear what value is set for the life of an anencephalic infant, because this child is incapable of having this idea of staying alive or prolonging their life. The parents of a born anencephalic baby always have the ability to withdraw from any life-sustaining treatment. When life-sustaining treatment is stopped, society respects the anencephalic child by treating like any other terminally ill patient who has stopped such treatment. After the anencephalic child has passed, its body is not dishonored, but given a proper burial like any other human being. In the same way, because the anencephalic infant is unable to possess an interest in staying alive, respect for the importance of the child does not automatically require the exclusion of donation of the infant’s organs before death. Instead, society should show its admiration for the anencephalic infant by treating it as any other person whose organs are removed for transplant after death. The definition of a “good” life may change if regulations change for anencephalic organ donation.
There are limits to the price society can and should pay to save lives, but none of the arguments against parental donation of anencephalic organs suggests that these limits would be reached if the donation of anencephalic organs were to be legalized. While there are many objections because of the view that donation would be taking advantage of an innocent infant, when the organs are treated as gifts and the possibility to save many lives can change many opinions. This is shown by the willingness of parents to carry a baby destined for death to save another child in need.
Rather than forbidding donation of organs from anencephalic infants, I believe certain safeguards should be implemented to preserve public trust in the organ procurement system. First, parental donation of organs from anencephalic infants should only occur if the discussion of donation is brought up by the child’s parents, and not if it is initiated by members of the family’s health care team. Second, parental donation should not take place without the full consent of the parents of the anencephalic child. Third, an experimental program for parental donation of organs from anencephalic infants should take place to assess its impact before the practice becomes widespread (“Harvesting Organs for Transplantation”). These safeguards would help to ease the transition of live anencephalic organ donation, as well as reassuring society of the cautions that are being implemented to secure their trust in the organ donation system.
In order to legally practice anencephalic organ donation one would need to amend the laws to permit organ donation from live anencephalic infants. This change in law would only open a path of opportunity to those parents willing to take it; it is not a must for all anencephalic infants to donate. A change in the law would only give an option to help save as many lives as we can. Heroes come in all shapes, sizes and forms, and they don’t all have cartoon physiques, masks and a cape.
By Michaila Kaufman