Anencephalic babies as organ donors

Babies with anencephaly are born with a neural tube defect, which means that they do not have the cerebral hemispheres, but do have variable amounts of brain stem and cerebellum.  They develop without the top of the skull, but have a partial skull, including the face.  The brain stem allows those that are live-born to breathe, their hearts to beat, to suck, to feed, to move, to exhibit facial expressions and sometimes respond to stimuli; but they are not conscious and are either born dead or dying.

Anencephaly is one of the most common neural tube birth defects and naturally occurs once in every thousand pregnancies and is thought to be due to dietary deficiencies such as folic acid, exposure to chemicals or genetic mutations.  Most anencephalic foetuses die early naturally during pregnancy and many are aborted as it is easy to diagnose on prenatal scans.  However some parents choose to continue with the pregnancy and it is thought that there are as many as 1000 anencephalic babies born in the US every year (Life before Birth by Bonnie Steinbock 2011).  55% of these babies are stillborn and the remainder usually live a matter of hours or days; although Baby K, born in Virginia in 1992 was kept alive for 2.5 years because the mother was a Christian who believed God should decide when the baby should die, not doctors, and the case ended up in the US Supreme Court. (http://www.stanford.edu/~mvr2j/sfsu09/extra/BabyK.pdf)

In the 1980's and 90’s there was much debate about using anencephalic infants as organ donors.  Apart from a few live organ donations (eg. kidneys) organs are only taken from individuals declared dead under the dead donor rule.  There are very few organs available for paediatric transplant and using the healthy organs from anencephalic babies who have a very limited life span was thought to be a solution.  The problem is that the organs of an anencephalic baby deteriorate quickly because of irreversible hypoxic injury and are then unusable.  The debate centred on the definitions of death, some scientists arguing that brain absence meant the same as brain death as there is no possibility of ever gaining consciousness and that these babies could be an exception to the normal rules to enable the organs to be in the best possible condition for transplant.  However most people believe that anencephalic babies are born dying and are not dead and that it would be wrong to remove organs before the normal criteria for death have been established

In October 1987 Canadian doctors artificially kept alive Baby Gabrielle, the only reason being so that her heart could be transplanted into an American baby as the parents had requested (New York Times).  The debate became very heated as parents of unborn anencephalic babies wanted to give their children’s organs which raised the ethical issues of whether  parents could donate organs of babies who could be classified as dying rather than dead and the consequences for other vulnerable people if the classification of death was altered to include lack of consciousness, such as those with severe dementia or those with terminal illnesses.  In 1995 the American Medical Association approved the donation of organs from anencephalic children, but rapidly withdrew its report when faced with criticism from both society and the medical profession.

The debate still continues as some argue for the lack of ‘personhood’ of an anencephalic in an attempt to cause society to rethink of them as a ‘product of conception’ rather than a human life, such as A A Howsepian, who published an article in The Ethics of Organ Donation in 2011 saying that ‘we need only look at them and see that there is nothing human there.’  This is running alongside research (The Embryo Project Encyclopedia) that has isolated gene mutations enabling scientists to produce headless mice on demand and the technology is thought likely to exist in the near future for the deliberate production of headless humans as a source of transplant donors, presuming that a head-less organ donor would not be classed as a living being.  In the US there is a growing call for the criminalisation of the intentional creation of anencephalic human beings as current anti-cloning regulations ‘do not cover the possibility that scientists might intentionally create non-clone anencephalic infants to serve as transplant organ reservoirs.’ (Page 39 of Paging King Solomon)

There is already a complex black market for the selling of kidneys from live donors, statistics in the Guardian of 27 May 2012 state that a kidney is sold every hour, usually bought from vulnerable, desperately poor people.  There would undoubtedly be an illegal market for any organs produced from anencephalic babies, which naturally occur more frequently in poorer populations.  In 2001the parents of a baby girl suffering from Fanconi’s anaemia used assisted reproduction to deliberately produce a boy to save his sibling’s life (WebMD).

We need to be on the alert so that when the debate is raised we will not be caught unaware as undoubtedly there would be pressure to create an anencephalic life in order to produce a healthy organ to save an existing child.

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