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Three Types of Anencephaly

Meroanencephaly

Definition: Meronanencephaly is a rare form of anencephaly characterized by malformed cranial bones, a median cranial defect, and a cranial protrusion called area cerebrovasculosa. Area cerebrovasculosa is a section of abnormal, spongy, vascular tissue admixed with glial tissue ranging from simply a membrane to a large mass of connective tissue, hemorrhagic vascular channels, glial nodules, and disorganized choroid plexuses.

Holo Anencephaly

The most common type of anencephaly, in which the brain is completely absent.

Craniorachischisis

The most severe type of anencephaly, where area cerebrovasculosa and area medullovasculosa fill both cranial defects and the spinal column. Craniorachischisis is characterized by anencephaly accompanied with bony defects in the spine and exposure of neural tissue.

Significant Anencephaly Research

Some genetic research has been conducted to determine the causes of anencephaly. It has been found that cartilage homeoprotein (CART1) is selectively expressed in chondrocytes (cartilage cells). The CART1 gene to chromosome 12q21.3–q22 has been mapped. Also, it has been found that mice homozygous for deficiency in the Cart1 gene manifested acrania and meroanencephaly, and prenatal treatment with folic acid will suppress acrania and meroanencephaly in the Cart1-deficient mutants.

Ethical and Legal Implications of Anencephaly

Varying Ethical Issues

Personhood

Modern philosophers define personhood as consciousness of the external world, in which a being sustains self-consciousness, self-determination, rational capacities, emotional expressions, willful direction, and communicative and social abilities. However, a conflicting issue is the idea of potentiality--someone who is in a coma, asleep, or has anencephaly can still have the capacity to function. In regards to those in a coma or born with anencephaly, such individuals are said to have latent capacity. Latent capacity describes a future or delayed ability to function. Some more obscure qualifications of personhood are sentience, the possession of a soul, and severe cognitive repair. The crux of the ethical and legal implications of anencephaly lies with an anencephalic's status as a person.

One of the major issues concerning personhood is organ donation. Initial legal guidance came from the case of Baby Theresa in 1992, in which the boundaries of organ donation were tested for the first time. Infant organs are scarce, and the high demand for pediatric organ transplants poses a major public health issue. In 1999, it was found that thirty to fifty percent of children under the age of two die while waiting for transplants. In order for infant organs to be viable and used for transplant, they must be removed while the infant is still alive. However, this poses both legal and ethical issues. Under federal and state laws, it is forbidden to remove organs from a donor who is still alive. And from this, several questions have been posed. Are anencephalics, in fact, alive? Ultimately the arguments come dow If it were decided that the life of a person is to be ended how is it done? Euthanasia of humans is illegal.

There are three different arguments in support of or against donation of anencephalic organs: utilitarian, Kantian, and pro-life. Utilitarians believe that the choice that benefits the most amount of people is the most ethical choice. In the case of organ donation, since anencephalics cannot experience pleasure, their only good is to be organ donors. The Kantian view follows that humanity should be treated as an end and not a means. Anencephalics have no better purpose than to be organ donors and better the lives of other infants. Finally, pro-life is against organ donation, preserving that the right to life be given to all human beings beginning at conception.

Underlying these three philosophies is the classification of anencephalics as persons. Ultimately, the goal of those in support of organ donation is that it will decrease the shortage in infant organs. It has been estimated that approximately 400-500 infant hearts and kidneys and 500-1,000 infant livers are needed in the United States each year. Currently laws prevent organ transplantation from persons who are still alive. Furthermore, laws prevent any form of euthanasia to cause death. Because anencephalic neonates have partially functioning brain stems, they reserve some of the body’s autonomic functions, such as those of the heart, kidneys and intestines. For this reason, some are led to believe that anencephalic neonates are functioning human beings despite their unawareness of existence.

The pros given for organ donations are that many children will be saved from death and furthermore, parents of anencephalic children think that some good comes from organ donation. Furthermore, it saves the costs of caring for a terminally ill child and instead of two babies dying, health care providers are able to save one. The cons are that several laws prevent removing organs from a living being or make organ donation from anencephalics impossible, some organs from anencephalic children cannot be transported do to abnormalities, and the fear that there is not a significant amount of anencephalic donors to reach the demand for certain organs, such as kidneys.

Ethically, the main issues with organ donation are a misdiagnosis of anencephaly, the slippery slope theory, that anencephalic neonates would rarely be a source of organs, and that it would undermine confidence in organ transplantation. Slippery slope concerns are a major issue in personhood debates, across the board. In regards to anencephaly, organ donation could open the door for abuses of other persons who are organ donors such as an elderly person with severe dementia. Another issue is the number of children who would actually benefit. There are discrepancies in statistics; however, it is known that most anencephalic children are stillborn.

Proposals have been made to bypass the legal and ethical issues surrounding organ donation. These include waiting for death to occur before harvesting organs, expanding the definition of death, creating a special legal category for anencephalic infants, and defining them as non persons.

Brain Death

There are four different concepts used to determine brain death: failure of heart and lungs, separation of body and soul, whole brain death, and neocortical death. Some argue that anencephalics experience neocortical death, in which there is an irreversible loss of consciousness and self-awareness, two determinants of a person. Brain death is another source of support for organ donation.

Neocortical death, similar to a persistent vegetative state (PVS), involves loss of cognitive functioning of the brain. A proposal by law professor, David Smith, in an attempt to prove that neocortical death should legally be treated the same as brain death, involved PET scans to determine the similarities. However this is not a well-received proposal considering the contradicting views on classifying brain death.

To Continue or End the Pregnancy

Anencephaly can be diagnosed prenatally with a high degree of accuracy. Given that anencephaly is a fatal condition, parents receive the option of abortion either in the second or third trimester of pregnancy, depending on the abortion laws in the state. In 2012, Brazil extended the right of abortion to mothers with anencephalic fetuses. This decision is, however, receiving much disapproval by several religious and human rights groups.

"Drawing the Line" Rebuttal

The “drawing the line” rebuttal seeks to establish when a fetus becomes a person and if it is able to think by itself.

Legal Proceedings

The case of Baby Theresa was the beginning of the ethical debate over anencephalic infant organ donation. The story of Baby Theresa remains a focus of basic moral philosophy. Baby Theresa was born with anencephaly in 1992. Her parents, knowing that their child was going to die, requested that her organs be given for transplantation. Her physicians agree, however, the transplant could not take place due to a Florida Law banning removal of organs before the donor is dead.

Baby K was an anenecephalic infant that was kept alive for three years under intensive care by order of the Fourth Circuit Court of Appeals.

Uniform Definition of Death Act

A model bill stating that an individual who has sustained either 1) irreversible cessation of circulatory and respiratory functions or 2) irreversible cessation of all functions of the entire brain, including the brain stem, is dead. Resulting from much debate over the definition of death and is applicable to the debate over anencephaly. Many legal quesions evolve from state proceedings based off of the UDDA and the UAGA. There have been two state bills questioning whether or not death and organ donation laws should be changed. California Senate Bill 2019, aimed to amend the UDDA to define anencephalic infants as already dead. New Jersey Assembly Bill 3367 proposed to allow anencephalic infants to be organ sources even if they are not dead.

Uniform Anatomical Gift Act

The Uniform Anatomical Gift Act grants individuals and, after death, their family members the right to decide whether or not to donate organs. Because it is against the law for any person to pay money for an organ, the person in need of an organ transplant must rely on a volunteer.