A Loss Rich With Things Gained

Some things are only noticed in their absence. The hum of a fan when you are falling asleep. The tension in your shoulders after a deep massage. The leaves on the trees after they have all fallen to the ground.

I did not notice the anger and tension I carried with me everytime I walked into a particular room in the NICU. The infant in the bed in the far left corner, through no fault of her own, inspired in me a jaw-tightening, face-flushing frustration of a strength I am ashamed to admit. And I only realize that strength now that she is dead.

She was delivered at 24 weeks gestation and had the usual early lung disease and inflammation with which the extremely premature infant struggles. Her parents wanted us to 'do everything' and we abided by their wishes. We did everything medically at our disposal and pulled out all the stops until we were sure she was going to survive. There is a difference among living, existing, and surviving. Surviving is a physician's goal for their patient, especially if their patient is at the beginning of their life. Living is what a parent wants for their child; to hear them laugh, to see them smile, to watch them observe and learn from the world. My friend in the far left corner was doing neither. For 8 long months, she struggled to pull air into her lungs that were for all intents and purposes, the consistency of leather. During this time, a tracheostomy was placed so that the breathing tube would not wear through the roof of her mouth and she would be able to suck on a pacifier when she was upset. She never sat up. She never cooed and babbled. She never rolled over. Her lungs were so badly damaged that everytime she got agitated she would become hypoxic and her heart rate would drop dangerously. Because of this, we gave her ever increasing doses of sedation and pain medicine. Towards the end, we could barely let her wake up at all for fear of losing grip on her tenuous oxygen saturations. She was merely existing. And yet we kept going.

After watching a baby struggle so hard to live, it hurt me to watch her struggle so hard to die. I realize now that my anger came from walking into that room and feeling like I was playing on the wrong side of the field, fighting for a cause in which I didn't believe. I don't make the big decisions here. I'm not sure that I could. I make critical acute care decisions so these infants will survive until morning. I looked at her night after night and silently told her that I was sorry, so sorry for doing this to her.

A week ago I walked into that room and reflexively glanced at the far left corner. She was gone. I felt the weight lift from my shoulders and the breath that I had been holding let go. There was a lightness in the room that hadn't been there before. What was left behind, for me, was that her struggle was not in vain. She won after all. I choose to believe that she is at peace. Finally.