Into the room I hear him come. Above me, his head appears. Then, with blue plastic hands and a dangling toy, he starts poking at me. He lays his hands on my head, then wipes the goop from my face. He shines a light in my eyes and then in my mouth. He prods my neck, then holds the dangling toy against my chest—first here, then there, and listens. He squishes my belly, flips me on my side, runs his fingers down my back, checks my diaper, tickles my feet, pats my head. His eyes smile. I can’t see behind his mask, but I think his mouth is smiling, too. He coos something I cannot understand. Then he is gone. The ceiling is back.
Into the room I go, calling “Hello!” and “Good morning!”, expecting that a mother will emerge from the closed bathroom door that I pass on my way in, or from the pillow-covered armchair in the far corner. There is a baby in the room, dwarfed by her cradle bed and swaddled in blankets. I approach nervously because I want the mother’s permission to examine her. But there are no movements in the room other than these 4.5 kilograms of baby and the drips of her IV fluids. I poke my head into the cradle to look at my little patient.
I had been primed to notice her low-set ears, small head and abnormal belly button, the stigmata of her trisomy 13 chromosomal abnormality. This little 11-month-old girl had been hospitalized for “failure to thrive”—yet I could hardly look past her raucous Einsteinian mane of jet-black hair, or her left hand, covered in a grandmother-knit mitten. The mittened hand is in her mouth, and she smacks her lips against it, sucking rhythmically. Too easily, I pull her hand away from her mouth. With plodding, semiconscious effort, the arm resists gravity and inertia to resume its original place. Her limbs are mostly bone—dangling skin that has almost nothing to protect, unanchored vasculature that has almost nothing to nourish. Her belly is distended and soft, splaying to the sides, and she gurgles and burps constantly, unable to control the formula feedings that is sent through her nasogastric tube every three hours. Who can tell if she is hungry?
I left the room, thinking that the child’s mother could probably tell when the little girl was hungry. But over the course of six hospital days, I never met the mother. I never learned the answer to my question. I wondered where the girl’s mother could possibly be that was more important than being here. How could a being as vulnerable as this little patient can be left alone and still survive the day, and why would a mother, during brief visits at night, sit idle and let a stranger care for her dying child?
Then I remembered that regardless of the very best intentions, unspeakable amounts of love, or uncontrollable grief—there may be other children to feed, family to support, bills to pay, lives to help live.
Contributing Writer Emeritus
University of California Irvine School of Medicine
Eric Ballon-Landa is a medical student at UC Irvine and MPH candidate at UCLA. His undergraduate education was at Williams College, where he double-majored in art history and biology; he has attempted to maintain this multidisciplinarity ever since.