Honoring the impact of even the smallest, briefest lives

It was a Wednesday in late spring, 1972. I was a nursing student in my final months of training, eagerly awaiting graduation.

When I arrived on the maternity ward that morning, my nursing instructor told me that I’d be caring for a baby, only hours old, with special needs.

I thought she’d send me to the neonatal ICU. Instead, to my surprise, she motioned toward the linen closet, its doors closed tight.

“The baby was born without a complete brain,” she said. “A condition called anencephaly. He can’t see or hear. And,” she added, “they don’t expect he’ll live out the day. So try not to get attached.”

The nursing care plan was concise: “You don’t need to do anything other than observe his breathing, turn him occasionally, change his diaper and bathe him.”

Hearing these instructions, so different from the nursing care I’d seen given to other special-needs infants, I felt both curious — why is this baby hidden away in a linen closet? — and a bit frightened.

Cautiously, heart pounding, I opened the closet door.

The steel linen rack had been shoved aside to make room for a single isolette. It held a sleeping newborn boy. There was no card proclaiming his birth date, weight or name.

I had expected to see a monster. Instead, I saw an infant with a compressed forehead, tightly closed eyes and perfectly chiseled lips and chin. His skull was steeply sloped and covered with blond hair.

I stood and watched him sleeping. From some angles, he looked like an elderly man. If I turned him just a bit, he looked like a perfect, beautiful infant. My apprehension melted away. I touched his cheek and smoothed his hair. Maybe he would die within the day, but for now, I would pretend he was like any other newborn.

As I bathed him, I named him Baby Boy, trying to acknowledge the reality of his life, even if, as my instructor’s cool instructions implied, his life was worthless. At the same time, I struggled not to “get attached,” although keeping an emotional distance was already beginning to seem impossible.

After his bath, I picked him up and rocked him, although that wasn’t in the care plan. I sang to him, even though I knew he couldn’t hear.

When I returned from my break and found the linen closet light turned off, leaving Baby Boy alone in the dark, I felt a stab of anger and went in search of the charge nurse.

“Shouldn’t we leave a light on?” I asked, hoping that my tone didn’t reveal my agitation.

“Do you think a light would make any difference?” she replied.

“Might his mother want to hold him?” I persisted.

“Enough,” she said. “It’s a tragedy.”

One by one, the other students stopped by to see Baby Boy. Some wanted to hold him. A few shook their heads and said that it would be a blessing if he died. We all wondered about his mother — why wasn’t she involved in his care? We decided to do a bit of snooping.

We discovered that his mother’s room was just down the hall. One of the delivery-room aides told us that the baby had been whisked away at birth, before his mother awoke from anesthesia. At her husband’s urging, the doctors had told her that the baby was stillborn. She’d never seen or held him. She didn’t know that he was only a short walk away.

We students ambled past the mother’s room, peeking in to see her face. Her cheeks were flushed and her eyes puffy. She looked as if she hadn’t stopped crying.

“What if she could hold him?” one student asked our instructor. “Would that help to give her some closure?”

“Or would it simply increase her sorrow?” she responded.

As the afternoon wore on, I wondered if I’d been assigned to Baby Boy because he was considered a lost cause — even a bumbling nursing student couldn’t harm him. Wanting to do something, I asked if I might offer him some water.

“I suppose you could try,” my instructor said, “but I doubt there will be any sucking response. Remember, the doctors don’t expect him to live.”

Did he respond to the water bottle I offered? It seemed to me that he did: I saw his lips close around the nipple. Did he respond to my rocking? I thought that he did: he settled into my arms like any newborn might. A part of me hoped that the doctors were wrong.

Again, I approached the charge nurse.

“Could I try some formula?”

She rolled her eyes. “Really, I doubt the doctors would want to prolong the inevitable.”

On Thursday, when I returned for my eight-hour shift, Baby Boy was still alive. As I opened the linen closet door, he began to cry, a high-pitched, agonizing whine.

The charge nurse saw me coming.

“OK,” she said. “Try some formula.”

His lips smacked, and his cheeks tried to suck, but the formula just dribbled out of his mouth. I tried again and again, but there was no further response. I gave up and held him, rocking him as he cried. In that moment, I resigned myself to Baby Boy’s certain death, but I couldn’t close my heart.

When his keening persisted, the nurses worried that his mother might hear and, responding to some primal recognition, try to investigate. They moved her further down the hall, and that afternoon the doctors sent her home.

I wondered how long it would take her to stop crying over a baby she’d never seen, or how her husband lived with the knowledge that he’d left his boy in the hospital to take, in one doctor’s words, “way too long to die.”

On Friday, Baby Boy settled into a resigned stupor. His mouth worked in the pantomime of nursing. His fists curled and uncurled. His eyelids — did I imagine this? — opened, and his unseeing eyes seemed to search my face.

The following Monday, when I returned to the maternity floor, the closet held only linen. Baby Boy had died, alone, sometime on Saturday afternoon.

He died before the advent of grief counseling, before the time when his parents would have held him, taken his photograph and tied a lock of his hair in a blue ribbon. He died before we understood how necessary it is for families to gather together to welcome such a child and then to accompany him gently to his death.

Back in 1972, despite my own reaction to Baby Boy’s situation, I accepted that such disregard for life, secrecy and denial of grief was the norm. Here I am, all these years later, writing about Baby Boy.

Through his birth, his short life spent in the dark, and his death, he surely touched his parents’ lives — and that of an awkward nursing student as well.

Looking back, I know that we couldn’t have saved him. I only wish that we’d known then what we know now about honoring the impact of even the smallest, briefest lives upon our own.

Cortney Davis is a nurse practitioner. This article was originally published in Pulse — voices from the heart of medicine, and is reprinted with permission.

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