I was an only child.
Seven years before I was born, my parents had their first baby, but that child was born without a brain.
The condition is called anencephaly. The Greeks were very literal: the term translates as “no in-head.” It is a disturbingly accurate description of the neural tube defect which renders a baby “incompatible with life.”
Holoanencephaly, the most common form of anencephaly, left my parents’ baby with only a brain stem. This is not a form
of brain-damage;
it is the complete absence of a brain. In holoanencephaly, the skull and scalp also fail to form, leaving the brain stem visible, the eyes protruding from the sockets.
As soon as my mom gave birth, the room went silent. Not only was the baby not crying; no one in the room made a noise. Someone whisked the baby away. Someone else gave my mom an injection that knocked her out.
The doctor explained to my dad that with only a brain stem, the baby could breathe but not eat, would never be aware of its surroundings, and would not survive more than a few hours. The doctor recommended that my parents not see the baby, which he described as “looking like a whale.”
In shock, my dad agreed.
Having seen many photos of anencephalic babies, I am thankful that the doctor made that call. My parents were devastated enough without having that nightmare image in their heads.
My mom came out of a narcotic fog to my dad trying to explain what had happened.
“We thought we were having a baby, but we were wrong,” he told her. “There is no baby.”
My mom was a healthy 22-year-old. None of her pre-natal visits indicated any problems. It was 1967. There was no ultrasound, no blood test, no amniocentesis or fetal MRI that could diagnose anencephaly in-utero.
Today, the overwhelming majority of parents who receive a diagnosis of anencephaly decide to terminate the pregnancy. My parents had no clue. My parents had no choice.
Even had a diagnosis of anencephaly been possible in 1967, they still would have had no choice. Without abortion as an option, they would have been forced to continue the hopeless pregnancy.
Once they left the hospital, my parents never spoke to each other about what happened. That is the level of trauma they experienced.
When I was a teenager, my mom told me the story.
Once.
Just in case there was a genetic component, just in case I ever chose to get pregnant, she wanted me to know that anencephaly was a thing that could happen, a thing that had happened to her.
If they had known the baby was anencephalic, she told me, and had abortion been legal, she and my dad would have ended the pregnancy. She had no doubt about that. Abortion would not have been easy, but it would have less horrific than enduring a full-term
pregnancy, giving birth, then suffering for the rest of their lives from the agony of giving birth
to a baby that simply could not live. It is a wonder
that my parents’ marriage withstood that kind of trauma.
Yes, a tiny number of anencephalic babies have survived beyond a few hours, but they have no brain function. There is no cognition. To my parents, and to me, life without a brain is no life at all. Even when anencephalic babies survive beyond the usual minutes or hours after birth, they have no senses. They have no awareness. They cannot feel pain.
But my parents could feel pain.
And they did, for the rest of their lives.
Robbi Pounds is a columnist for The Graham Star. She can be reached by phone, 479-3383, or email, rpounds@grahamstar.com.