By Lauren Rissman
A distraught, exhausted mother asked through her tears, “Doctor, what would you do?” The palliative care, neurology and pediatric intensive care team sat in silence in the cold glow of fluorescent light. At that moment, I felt a zap of pain to my heart. It was sharp, followed by a lingering ache. It was visceral and unforgettable.
The mother asked again. As a team, we discussed with her the uncertainties in prognostication. Sometimes kids get better, and sometimes they don’t. After a cardiac arrest, it can take weeks for kids to regain function, if at all. This question was not mine to answer, but rather use it as a stepping block to evaluate a family’s hopes and expectations for their child and their future, as a family.
“He loves The Lion King,” she explained. Though her son had a traumatic brain injury and was receiving multiple sedating medications, she thought it was important for The Lion King to be playing in the background, so her son could enjoy it. But, within 10 minutes of the opening credits, he had had another episode. She described the episode as arm stiffening, and then demonstrated what she had observed. One arm, over her right ear, reached for the sky. Her left arm hung down by her side, fingers pointing to the ground. She arched her back and turned her head. She paused and then began to cry. “I don’t want him to be in pain,” she explained.Read More »