A heartbreaking yet heartwarming story of a pediatric neurology resident’s struggle and empathy

The pager beeps early on the first day of my inpatient pediatric neurology service week. The pediatric intensive care unit (PICU) would like us to perform a brain death examination on a young boy before potential organ donation. An apparently healthy boy who had an unexpected clinical course that led to his current state.

As a pediatric neurology resident, I often have difficult conversations with our patients and families, but the discussions around brain death are the hardest. This family was agreeable to the brain death examination and wanted it to be done as soon as possible. There were no confounding examinations or lab findings either. I felt relieved.

I went and saw the patient in the morning. Multiple medications were dripping into his veins as the ventilator gave him breaths. The numbers on the different monitors confirmed stable hemodynamic status. His grandmother was sitting quietly at the bedside. It seemed like she was praying. I introduced myself, examined him, and talked to her briefly. I told her that I would be back later with the team. She nodded.

After the morning rounds, our team went to the PICU, including the staff pediatric neurologist on-call, the rotating adult neurology resident, and myself. His bedside nurse, a pediatric intensivist, and a respiratory therapist who was going to perform the apnea test after our examination also joined us. His father was lying in bed with him and slowly stood up as we walked in. We introduced ourselves to the father and the grandparents. The grandparents were tearful, and the grandmother was sobbing intermittently.

I started the brain death examination by checking the consciousness level. I called his name and then touched him. His father trying to help me, said, “There is chocolate milk in the fridge; hey buddy, do you want to come and get it?” I paused for a moment. Pictures of my 6-year-old son flashed through my mind. What must be the boy’s mother feeling? What would have been going on in his father’s mind? I felt a lump in my throat.

I regained my focus and strength to continue the examination. The brain stem reflexes were tested one by one. It was time to perform the cold caloric test. We raised the head end of his bed to 30 degrees; the next step was to check his ears with an otoscope before putting ice-cold water in his ear canal. I took the otoscope and looked into his right ear.

His dad asked, “What do you see? Can I take a look? I always wanted to see.” It was an unusual request. “Of course!” I said. I handed him the otoscope and showed him how to look.

I remember how my husband always convinces our son for an ear examination by saying, “I think the doctor will find the missing dinosaurs in your ears.” I am sure this father had similar memories of his little boy. Knowing this was his last chance, he probably wanted to secure his memory in search of the “missing dinosaurs.” I felt a strong connection with him and his family.

His father looked in the ear and handed the otoscope back to me. He said, “thank you,” in a low voice heavy with sadness this time. His grandmother sobbed loudly. I could feel tears rolling down my face under the mask and the face shield.

I went home in the evening and hugged my son tightly. I needed that hug more than him. The patient was declared brain dead after the second brain death examination that night. His family decided to donate his organs amidst their immense grief and sorrow. It has been a couple of years since this happened. This incident comes to my mind every time I take the otoscope during a brain death exam since then. I hope his family is coping and finding peace after losing their beloved little boy.

Sujana Madathil is a pediatric neurologist.


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