If an organism is able to breathe, circulate blood, and exhibit basic physical functions, we assume it is alive. What if this same organism is without a critical part of its brain, and thusly is deaf, blind, and wholly unconscious– is this organism still alive? How are we able to define what makes us human, or better yet, what makes us whole? Within an animal or plant life, we might consider these characteristics to be unremarkable, but within a human it is an atrocity. There are babies whose entire conception, gestation, and lives are lived out in a black hole of unconsciousness, brought on by the congenital disorder anencephaly. This disease raises more questions than it does answers; above all, it brings heartbreak to those affected by its occurrence.In the normal trajectory of fetal development, the fetus’ neural tube should close on its 30th day after fertilization. The neural tube is a channel which eventually closes in order to develop the central nervous system, which is the brain and spinal cord. In some cases, however, the neural tube may not properly close due to some impediment or other, and the fetus will suffer damage or abnormal development of its forming nervous system. In some cases, this damage can result in the fetus having anencephaly.
Anencephaly is a somewhat common congenital disorder in which, during the 21st to 28th day after fertilization, the neural tube of the fetus does not close; therefore, the fetus is missing its prosencephalon (also called the forebrain), and large parts of its skull and scalp. The prosencephalon, which includes the diencephalon and the telencephalon, is responsible for the development and use of speech and language, motor functions, olfactory senses, memory, emotion, certain metabolic processes, and autonomic activities. The areas of the brain which are formed in an anencephalic fetus are left exposed, without any skin or bone to cover it; they are usually detrimentally affected by the amniotic fluid that surrounds the fetus.
Fetuses afflicted with anencephaly, if carried to term, are born blind, deaf, unable to feel pain or certain physical stimuli, and are not conscious. They are, however, able to exhibit reflex and autonomic functions because their brainstem has not been affected, and thus are able to breathe, and depending on the situation, able to react to certain stimuli. Anencephaly may also affect the baby’s physical appearance: there is an obvious and large fissure in the back of the child’s head, sometimes extending to the forehead, where their tissue and brain are exposed; they may have overly protruding eyes; extremely disfigured head and face; and other malformed facial features. These children’s bodies are otherwise perfectly formed and healthy. Unfortunately, these babies will never be cognizant or able to think or talk, for they are totally unconscious their whole lives.
There is no known cause for anencephaly, but it is speculated that it happens because of a combination of genetic and environmental factors. It occurs indiscriminately in all races, but varies from area to area. Anencephaly occurs in 1 out of 10,000 births in European countries and the US, and 10 out of 10,000 births in Latin America and China (2, 3). Current studies show that there is a higher rate for anencephaly within women who take insulin for diabetes, as well as those who take certain epilepsy medicines. It is recommended for pregnant women in general to take folic acid throughout their gestation, and this may be a link in preventing anencephaly. Women who have anencephalic pregnancies are unlikely to have another child who suffers from the disease, and if they routinely take folic acid, the risk of another anencephalic pregnancy goes down to 1% (1, 2).
Anencephaly can be observed within a routine sonogram, since the absence of the fetus’ head is apparent; at this point in time, parents are given the option of aborting the fetus, or carrying it to term. Those who choose to carry the fetus to term are aware that their child may very likely die during gestation; if they survive birth, they will undoubtedly die within minutes, and at most, a few days. Women who choose to give birth to anencephalic babies usually undergo a C-section, increasing the likelihood of a live birth; however, in over 55% of these cases the child is stillborn (1, 2). Curiously enough, there have been documented cases of anencephaly in twin births: while one twin may be healthy, the other may suffer from anencephaly. In such cases, women may choose to undergo a partial abortion, which carries some risk to the healthy twin. Other women choose to complete their term and deliver both babies with few complications.
The physical stress of carrying an anencephalic child is significant on the mother; besides experiencing great emotional distress, some women suffer polyhydramnios. Polyhydramnios is a condition in which an excessive amount of amniotic fluid leaks into the amniotic sac, causing a woman’s abdomen to exceedingly swell up. This is a somewhat painful condition, and can lead to the umbilical cord slipping in front of the baby, the placenta to prematurely separate from the wall of the uterus, and the fetus’ death.
If an anencephalic child survives birth, doctors will not attempt to “save” the baby from its impending fate. No attempts are made to incubate, resuscitate, or repair the child’s anencephaly; rather, most doctors merely offer hydration and limited nutrition in order to make its short life comfortable. The parents will most likely request they be left alone with their child for the duration of its life, with little medical intervention. In most cases, anencephalic babies eventually stop breathing as their organs and brain fail, and peacefully expire with no pain (5).
Women with anencephalic pregnancies must make a difficult decision when they learn of their condition. They must consider their choice to abort or carry to term their fetus, and although between 90-98% of women who learn they are carrying an anencephalic child will abort, there is a small percent of them who choose to continue with their pregnancy. In most reported cases, these women hold strong religious convictions and thusly are morally against abortion, wholly against holding a person’s life on their hands, and preferring “God do his will”. It is a deeply personal choice these women must face in such circumstances, but it should be noted that carrying a child whose survival chance is zero places women in a detrimental psychological and emotional state (4, 5).
Equally as important, anencephaly raises the question of what classifies as existence and life. There is a surging debate as to whether or not these babies are truly alive, and whether they should even be birthed. By medical standards, these babies are physically alive but mentally dead; there is little comfort or medicine they can administer to these babies and their families. Should the parents of anencephalic children bring these children into the world, when all they will experience is nothing – no pain, but also no love? Is it not more traumatizing for these parents to have to see their malformed child – a little being who holds big dreams and expectations in his hands – be born, and minutes later die in their arms? With prenatal testing and sonograms, our society has been able to explore the once unimaginable, and various diseases and disorders can be caught before a child is born. So many things can go wrong in the process of reproduction it is a miracle there exists six billion living humans on our planet. There has been an upward trend of parents choosing to abort those pregnancies, including those who have Down’s Syndrome, a severe but not as hopeless disorder as anencephaly. Who are we to be able to choose if a human being lives or dies, whether we should be allowed to extend their pain for a few minutes of somewhat selfish joy? Stemming from that argument, what makes an anencephalic baby a human being? His body is formed like a perfect human being’s, but he is not emotionally or mentally “alive”; he can breathe and eat and even cry, but he cannot think or speak or know. In biological terms, an anencephalic child is a living organism, but not a live human being. Anencephaly research currently offers no cure for its occurrence, and it is a heartbreaking ordeal for all of those involved. Irregardless, anencephalic babies are beings who have been engendered, wanted, loved, and to many, truly live in spirit or soul.
1. "Anencephaly." Gale Encyclopedia of Neurological Disorders. The Gale Group, Inc, 2005. Answers.com 18 Nov. 2006. http://www.answers.com/topic/anencephaly 
2. “Anencephaly.” National Institute of Neurological Disorders and Stroke, 2006. 19 Nov. 2006. http://www.ninds.nih.gov/disorders/anencephaly/anencephaly.htm
3. “LA Times, 2006. 19 Nov. 2006. http://www.latimes.com/la-na-hospice28jan28,0,4777090,full.story?coll=la-homepage-calendar-widget 
4. Links about Anencephaly. Anencephaly Net, 2006. 19 Nov. 2006. http://www.anencephaly.net/ 
5. Personal stories and information on Anencephaly. Anencephaly Information, 2005. 19 Nov. 2006. http://www.anencephalie-info.org/e/index.htm