“Every one of these patients should terrify you,” the fellow said. I thought he was just being dramatic.
Initially, I had been intimidated by the pediatric cardiology rotation, but as the weeks progressed I became more comfortable discussing physiology and goal oxygen saturations, adjusting medications, and reading EKGs on the fly. The complicated patients started to feel less complicated as I gained experience with their care and became familiar with their stories.
One young patient brought joy to the daily tasks of the rotation; there was always a chance of seeing her smile and wave on her daily laps around the unit, wearing her pink sparkle shoes. She would stop at every room and wave with an enthusiastic “Hello!” We knew to expect her daily visits to the resident workroom and interruptions during rounds to say hello or demand a high-five. On my long call nights, she would make several of these laps. We would dance in the hallway, her pink sparkle shoes twinkling in the hallway light. If I was walking past her room, I would wave and ask, “Where are your sparkle shoes?!” She would giggle and hide under her blankets, kicking her feet. She was such a presence of light and always made me smile, and so in my mind, she was safe.
While many of my other patients were far more ill, it was her condition that suddenly took a turn for the worse. I came back to work after a rare day off to find that she was not her usual smiling self. I was on call that night when she became hypotensive; her pressures had been slightly soft in the afternoon and began slowly downtrending as the hours passed. As I assessed her condition at her bedside, she was not her bright, bubbly self. In fact, she barely acknowledged my existence.
After a thorough exam, I thought she needed a higher level of care and the fellow agreed. As she was wheeled away to the cardiovascular ICU, I brushed aside an intrusive thought: “Was that the last time I will see her alive?” Even though she had been moved to a new unit, her decorations remained in her old room, as if to say we knew she would soon return.
A few days passed. I was sitting at my resident computer pre-rounding when the child life specialist entered the workroom. “We thought you all would want to know…” she started. “The family has decided to terminally extubate today. Now would be a good time to see her, if you’d like.”
She seemed so peaceful laying in the bed.
The equipment beeped and whirred, surrounding her bed like a protective castle. Her eyes were closed, the ventilator breathing for her. I placed my hand in hers and gave it a squeeze. “Sweet girl,” I said. No response. “Oh, sweet girl,” I murmured just for her to hear while stroking her forehead and hair. I thanked her grandmother for sharing her with our team as I left the room, just seconds before my grief spilled down my face.
She had been her happy self just four days prior. It seemed so unfair, so unjust even though I had seen plenty of the undeserved things our patients experienced in my two years as a pediatrics resident. Life was not fair. Medicine did not cure all.
I was neither naïve nor jaded, but this case felt particularly inexplicable. “Sometimes, you can do everything right, have the right diagnosis, the right timing … and bad things still happen. You cannot blame yourself,” I had told the medical students on our team just a few weeks prior. Yet I still felt guilty about her case, about thinking her brightness and light made her safe. It is difficult to practice what I had preached to my students.
As the days of training continue, I am slowly learning to forgive myself for thinking that she was safe. I think of her every time I see a small child in sparkle shoes. I picture her dancing down softly lit hallways, in those pink sparkly shoes, bringing a smile to all who see her.
Image credit: left alone by Igor Spasic licensed under CC BY 2.0.
Peer Reviewer
University of Washington and Seattle Children's Hospital
Allison is a Neonatology Fellow and Clinical Ethics Fellow at the University of Washington and Seattle Children's Hospital. Her interests include narrative medicine, neonatal ethics education, and neonatal palliative care.