Recently, an intern started to tear up as I was leading morning rounds. Our team had just examined a child nearing the end of his life. The outline of his protruding ribcage revealed his labored breathing. He was curled into an unnatural contractured state due to the stiffening of his muscles courtesy of his progressive neurologic disease. Despite the BiPap mask on his little face, he was breathing rapidly but ineffectively. I pointed out in a dispassionate clinical voice to my young team of interns that this respiratory pattern was typical of the end of life, and I suggested we start a morphine drip to prevent any potential air hunger. From the corner of my eye, I saw one of the interns leave the group. I continued with my assessment and iteration of the plan.
When she returned to rounds it was clear, she had been crying. I gave her a quick hug and we moved on to the next patient. Later in the privacy of the workroom she asked me if it was ok to cry and I immediately thought of a patient from one of my first years as an attending.
Aimee, came to me at 1:30 in the morning from the interventional radiology suite after a coiling procedure of a large vessel in her brain that was stealing blood from her systemic circulation. If the radiologists did nothing, she would die. When she went for the procedure she was only a few hours old. Everything had gone well until the worst complication occurred; she began to bleed into her brain. By the time she was admitted to me, she was in hemorrhagic shock and comatose. I did what I could to stabilize her, but I knew her prognosis was grim.
I found Aimee’s parents on the post-partum unit. Her mother was recovering from her c-section delivery. I started to give them the medical details of their little girl’s condition in a calm, soft voice. When I reached the point that I had to tell them she would likely die, I started to tear up and my voice began to crack. I tried to pull it together but in that moment all my internal resources left me. My white coat and scrubs were scant protection from the absolute emotion of that moment. I was horrified as my emotions, so close to the surface, came spilling out into the room. Although I was quite experienced at giving sad news, for some reason with this baby and these parents, I could not maintain a balanced professional yet empathic stance.
After I had finished speaking to Aimee’s parents about the sad reality of their newborn baby’s illness, Aimee’s mother held my hands and thanked me for my honesty. Her incredible grace and poised acceptance of the horrible news humbled me. My professional composure returned in the face of her quiet strength.
They came to the bedside with me and saw their little girl for the first time since she was born. She was swollen from all the fluids she had received during her resuscitation and her head was covered with EEG leads. The breathing tube in her mouth distorted her otherwise pristine features. She didn’t move except for the occasional seizure. They held her hands and stroked her head as the nurses and I buzzed around making small changes to her medicines and ventilator.
By the time the sun came up, the continuous monitoring of her brain showed that there was no meaningful activity. Over the course of the day, they held her, spoke to her and sang to her. A little after sunset, they asked me to stop the life sustaining medicines and machines and to let her go. When they were ready, the nurses removed the EEG leads from her head and pulled out her IVs and turned off the infusions of medicines to sustain her blood pressure. I removed the breathing tube and placed Aimee in her mother’s arms and left the room. She was taking shallow breaths but appeared comfortable. After about an hour, they asked me to come back in and hold her. Aimee was a pale blue now and her breathing came only intermittently. She was close to death.
They handed her to me and told me they had said their goodbyes and were ready to let her go.
“Would you hold her while she dies,” they asked. “We know she’ll be in good hands with you.”
“Of course I will,” I replied.
They thanked me and left the room. After a moment of uncertainty, I settled in with Aimee and rocked her until she stopped breathing. I held her a while longer and eventually I called the time of death. I held Amy until the pathology team came up to retrieve her body. As I sat alone in her then empty room, I thought about the errant blood vessel in her little head that caused such a cruel calamity. Were it not for some misguided genetic signal, Aimee would have been perfect.
There are few things more senseless than a child with an untreatable disease. As a pediatric critical care doctor, I see my patients as innocent victims of genetic vagary, poverty, and bad luck. They have no hand in their disease and no say in their treatment. As a physician, it’s important to develop the ability to manage patients from a safe distance, which affords reasonable and objective medical care and self-preservation. However, that safe distance has the potential to morph into cynicism and bitterness that leaves an ugly pall over the work of the intensive care unit. Finding a balance between a reasonable distance and a meaningful but safe proximity to patients is a constant challenge in the PICU.
Although I cared for Aimee and her family for less than twenty-four hours, every year they send me a Christmas card; two gorgeous parents and the smiling faces of their three children. I picture their card with four children, with Aimee. And I cry a little bit with them.
In answer to my intern’s question, “Is it ok to cry?“
Yes, it is.