Awareness of anencephaly is awareness of joy

May is anencephaly awareness month. It is a time to direct our gaze toward people that some would rather not see. Anencephaly is a malformation of the cranium leading to severe brain damage. 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 of gestation, it is damaged by direct exposure to amniotic fluid. Instead of the normal grey, it looks like a bloody mass of tissue. For centuries these babies were regarded as monsters. The Hunchback of Notre Dame, in Disney’s 1996 film, is portrayed with anencephalic features.

Even recent medical textbooks have called these people “anencephalic monsters.” In the mid-1980s., a midwife who helped deliver such a precious child called out this injustice in 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?” As a result, the word “monster” was deleted from the next edition of Oxorn’s textbook.

The parents and loved ones of people with anencephaly experience them as anything but monsters. They bond with their children by love—just as every other parent.

Monsters are never those with disfigurations. It is we who become monsters when we cannot recognize the humanity of another. That’s why Anencephaly Awareness Month is so important.

When we are driven by emotions of fear, pity and disgust, we may willfully close our eyes to the real lives of others. Unwilling to see them as they are, we see them as projections of our own fears and revulsions. Inclined to think the problem will go away when the person goes away, we can focus so intently on what we imagine the parents are going through, that we think nothing about what the child is going through. Overlooking the humanity of another we inflict wounds on our own humanity. Telling ourselves that we are being merciful, we ourselves, become monsters.

The way we speak, think and act toward those three people out of 10,000 can change our entire world—either for the better or, for the worse. When we stop covering our eyes in horror, here’s what we see.

Anencephaly is related to spina bifida in the sense that it is a deformation of the neural tube (the spine and cranium). But, unlike spina bifida, there seems to be a higher rate among Hispanic mothers. Anencephalic babies are more likely girls than boys (75-80 percent). And studies show that women who supplement their diets with Folic Acid may reduce the risks.

Some children with anencephalic malformations die in utero. But many more survive until birth. One in 4,859 is born with this birth defect. It is the most lethal of birth defects. Only 14.4 percent survive the day of their birth. Only 5% will survive one month. And fewer than two percent will celebrate their first birthday.

The longest surviving anencephalic on record is Baby Angela Morales. She died on December 16, 2017—after living three years and nine months. When Sonia Morales was only 16 weeks pregnant, she learned that her baby girl was anencephalic. As with all parents of anencephalic children, she and her husband, Rony, had to grapple with the sad reality that their child would not likely live for more than a week.

Those who were horrified at the specter of death recommended abortion. But Sonia, like any mother, already loved the child growing within her. She and her husband, Rony, decided to care for her through whatever time God would give her life.

On Angela’s birthday, they had a priest administer Holy Baptism. Then she and her husband concentrated on showering her with love, caresses and coos. As the minutes and hours passed, they discovered that they were just as blessed by her love as she was by theirs.

Angela, too, received untold blessings. She lived to feel air on her face. She lived to feel her father’s arms and to hear his heartbeat. In short, she experienced not additional weeks and months of horror, but years of love and unexpected joy.

Awareness of anencephaly is to open our eyes and hearts to the truth about people who may not be in this world for long, but who will make this world a better place by their brief appearance.