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The human dignity of anencephalic babies

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Anencephaly is a birth defect in which the brain fails to form properly. An anencephalic baby is commonly described as having "no brain," although in fact the more primitive parts of the brain are generally present. Of those who are not killed before birth, many anencephalic infants are stillborn, but others live for a short time after birth, and a very few can survive a matter of months.

Some in the medical community view anencephalic babies with a sort of vampirish greed. As early as 1988, a journal article on anencephaly and organ donation noted that "as neonatal transplant science advances, the already acute shortage of small organs will likely grow worse unless new sources of organs are identified" (emphasis added). It being the case that small organs do not grow on trees, the new sources that need to be "identified" can be nothing other than live babies less "valuable" than the ones needing transplants.

One of these potential "sources" is named Faith Hope. Today she is 53 days old and breathes without any intervention. Her single mother Myah, blogging about her baby, reports being encouraged by doctors to kill Faith before she was born and being told that her baby would die shortly after birth. To be fair, most anencephalic live births do die shortly after, but Faith is not unique in her survival, either. Though she does not discuss it much on the blog, apparently Myah is feeling some pressure to offer her baby up for organ harvesting. In her post "Spare Parts," she writes with heart-wrenching irony,

It would be such a noble thing for me to do... after all, what other purpose could my baby's life possibly serve? She is harboring valuable baby organs, and let's face it... she's as good as dead anyway. Her organs could be used to save a baby who actually has a brain.

Myah might be encouraged by the opinion published by the U.S. Conference of Catholic Bishops on the dignity of anencephalic infants. The Church explicitly rejects the opinion "that anencephalic children, 'because of their apparent lack of cognitive function, and in view of the probable brevity of their lives', lack human rights 'or at least have lives of less meaning or purpose than others'."

Meanwhile, a secular ethical report on anencephalic babies as organ donors (PDF) asked, "Are anencephalic infants being considered as potential organ sources because they are dead, because they will die imminently and inevitably, or because their brains have not yet developed, and never will develop, to a stage at which they can be considered 'human persons'?"

The question really comes down to who has the best claim to the right of having the anencephalic child's organs: the child herself, or the potential transplantee? As with all organ transplants, clearly the answer is that the person born with the organs has first rights to them. A life cannot be ended, regardless of any external valuations of the quality of that life, in order to claim organs. Just as killing an embryo for its stem cells is wrong, so is killing a baby with a brain defect for its organs.

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