Anencephalic Children as Organ Sources

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Anencephalic Children as Organ Sources: A Review of the Literature

Gissel Aranda

University of Texas at El Paso


Anencephaly is a brain defect that inhibits the complete formation of the brain and the skull during pregnancy. This disease has no cure and the life expectancy is very low since there is only function of vital organs like the heart and the lungs (provided by their brain stem) for only a limited time. Its causes are unknown but it is believed that it is caused by environmental and genetic factors, as well as the lack of intake of folic acid by the pregnant mothers. The shortage of organ donors today has come to raise the proposal of using anencephalic infants as organ sources in order to save the lives of children who may have the opportunity to live. Although, it has been debated through the years that using anencephalic infants as organ sources may not be an ethical or legal practice as demanded in the “dead donor” rule, it is still a very controversial issue on whether it is preferable to give a better quality of life to this infant or to provide the opportunity to live to another child.

Anencephalic Children and Organ Donation: A Review of the Literature

As of today, organ donation has become a well-accepted medical practice by our modern society. However, the high costs of organ transplantation and the high demand of organs by infants, has been limited by the relatively small number of organs available for these children. This situation has motivated many scientists involved in the medical field to look for alternative approaches in order to supply the high demand of organs that is required year by year by a huge amount of children. Some of the sources that have been proposed as potential organ donators or sources are other animal species, human fetuses and dying children or newborns with terminal illnesses as anencephaly. All of these proposals have caused debate in the medical field and in our world society, which has come to consider four important questions about the matter:

1. What is anencephaly?
2. What has been the medical and ethical impact of this disorder? 3. What are the laws/policies regarding donating the organs from anencephalic infants to other children? 4. Should the organs from anencephalic children be harvested for transplantation? The literature review about anencephalic children as organ sources will focus on these four questions. What is Anencephaly?

Every year, thousands of children throughout the world are born with a birth defect on their central nervous system. Most of these diseases are mostly unknown but are widely spread throughout the globe due to the lack of knowledge of pregnant women and other unknown genetic and environmental causes. In a small survey conducted (Aranda, 2010), a sample of _____ were surveyed in order to determine their knowledge of the meaning of anencephaly or if they have heard of it. ___ were unaware of what anencephaly meant, in contrast ____ knew the meaning of anencephaly or were familiar with the disease somehow (Figure 1 shows these results). Anencephaly is a disease that has actually no cure; the infants that are born with it have a very low life expectancy which may vary from 1 to 10 days. However, there have been cases where an anencephalic child has survived for up to 16 months. These babies are born with a brain stem that allows them to breathe and their hearts to beat, but they are missing almost half of the brain which according to the National Institute of Neurological Disorders and Stroke (2010), means that “a baby born with anencephaly is usually blind, deaf, unconscious, and unable to feel pain”. When an unborn baby is diagnosed with this disorder, many women take the decision of not having their baby due to the difficulties this infant will encounter within his or her life. The parts of the brain that are missing are the ones that...
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