A couple made a baby boy. Into him they poured their hopes and dreams. But life is strange with its twists and turns, and things rarely go as planned.
The baby had a rough start. His brain was severely injured. The parents were told the chances of meaningful recovery were close to nothing. With heavy hearts but their son’s best interest in mind, they made the hardest decision of their lives – to provide for his comfort and nothing more. His life supports withdrawn, he was handed to them.
He did not die. Instead, he breathed. With that singular, definitive act, he proved his presence to them. They took him home, unsure what would come next. They did what anyone faced with such terrifying circumstances would have done – they fell in love with their baby. Their goals changed, but their love did not. Tinted by love, his staring spells became looks of cognizance, his reflexes became volitional motions. Think what you may, but do not judge them.
Unexpectedly, he has reached the age of 15 months. Through it all, the mother and father have been the perfect parents of a complex patient. But now he refuses to play the role of stable complex child. Instead, he is steadily worsening. It is easy for me to see this as I take ICU calls every fourth night. Not so for them. I don’t know what it feels like to build a dream and watch it crumble like sand, then to have to learn to carry on with what is left. I cannot imagine living a moment of their lives. Yet there they sit, next to him, waiting for rounds with smiling faces.
We are stuck. We wonder what’s in his best interest – to intervene with an invasive procedure that may allow him to go home or to withdraw interventions and provide him with comfort.
In my eyes, the real question is – where does he live? His parents believe that he is in the body lying on the bed. I can see why they feel this way – if he isn’t there, then what has any of this meant? Has he never been there? Did he leave sometime between defying death and creeping back toward it? These are frightening thoughts to face, indeed. And so, thoroughly entrenched, they must press on lest it be felt that they gave up on him.
I don’t know where he lives. Somewhere else? Heaven perhaps. In his parent’s memories for certain, and in my thoughts as well. In this limp body on the bed? I’m not so sure. But as he stares into his mother’s eyes, and jerks in response to her voice, I begin to doubt myself. How can I help them make this decision?
Perhaps this is the final lesson that residency will teach me.
No. I suspect I still won’t have an answer for the next parents I meet, once his story has played out. Only more questions. …
Dr. Behere was a pediatric resident at the Children’s Hospital at Dartmouth-Hitchcock, Lebanon, N.H., when he wrote this article. He is a first-year fellow in pediatric cardiology at the Nemours Cardiac Center at the Nemours/Alfred I. duPont Hospital for Children, Wilmington, Del. E-mail him at email@example.com .