May is Anencephaly Awareness Month. It is a time to direct our gaze toward people that some would rather not see. Anencephaly is a developmental malformation that leads to severe brain damage. During the first weeks of gestation, the upper end of the neural tube fails to close. The child is missing the top of the head. This makes the eyes appear unnaturally high on the face and the ears protrude.
Lacking a skull or scalp there is nothing to cover the brain. For months in the womb, it is damaged by direct exposure to amniotic fluid. At birth, the exposed portion is a bloody mass of tissue. Ancients regarded these as “monstrous births.” The Hunchback of Notre Dame, in Disney’s 1996 film, is portrayed with anencephalic features.
But primitive notions persisted well into modern times. As recently as the mid-1980s, medical textbooks still described these babies as “anencephalic monsters.”
A midwife who helped deliver such a precious child called out this injustice. She penned a letter to Dr. Harry Oxorn, author of Human Labor and Birth. She asked, “[Have you] ever thought about the fact that most parents start to fall in love with their baby while he/she is still in utero. That the soon-to-be child starts to have a life, a future, and a past all at once before birth. How DARE [you] and all other writers of textbooks refer to these babies as ‘monsters’! What on earth could be gained by perpetuating that term?”
To her great
