Each time I examine a baby with a heart defect, I comment in my progress note on the nature of their pulses and the state of their perfusion. “Pulses are full and the baby is warm and well-perfused.” Of course, no pediatric exam is complete without examination of the parent, but those important facts don’t always make it into the medical chart. Are they nervous, scared, angry? I look for the darting eyes, crossed arms, shifting weight from leg to leg. Sometimes the room is calm and quiet with relaxed parents casually watching the ritual of the physical exam from the couch. Other times, they snap to attention when I enter the room and approach the bedside in anticipation of an exam they know is worrisome. On rounds, parents in the intensive care unit are usually hoping to hear that their baby is improving, that they will get to go home and that this hospitalization, this nightmare, will be over.
One mom in particular stands out. We, the medical team, had an ambitious plan to wean her child’s continuous cardiac infusion, milrinone, and she knew her toddler wasn’t getting better. One day during rounds, she politely urged us to reconsider our plan. Her intuition as a mother was a powerful tool for the medical team especially when our practice isn’t necessarily directed by clear science or best practices. We were just trying to keep her daughter going despite the failing remnants of failing heart and lungs. As she advocated for her little girl, I heard my Dad’s voice in my head. My father had practiced as a primary care doctor for the first half of his career and saw most of his patients on house calls. When he cared for children, he looked to the adult in the room, usually a parent or grandparent, for approval. If he had the right diagnosis and plan, they were pleased and nodded. If he was wrong, they let him know it. Fifty years later, these words remained true. We adjusted our plan based in part on mother’s intuition and in part on the medical reality of her little girl’s desperately failing heart.
Later that week, this same mom pulled me aside. Her pupils were dilated, her breathing rapid, and I could practically see a bounding pulse in her neck. If I were documenting her physical exam, I would describe her as moderately distressed.
“What do we do now? Just go home and wait for her to get worse? She could get better right? This might be temporary?” she asked. She was pleading with me to give her an answer that she knew in her heart wasn’t true. I told her the truth. I didn’t know what would happen to her little girl. But I was doubtful that her heart would recover. We sat and talked for quite a while in an empty patient room. We talked about what taking her little girl home to a rural small Texas community with minimal medical support would feel and look like. We talked about faith and having hope. We talked about what a spitfire her little girl was, and we talked about the unfairness of it all. Every once in awhile she would ask me again, if it was possible that her daughter might improve. Though, a part of me wanted to tell this beautiful mom that everything would be fine. Miracles happen everyday. Her little girl would recover. My answer remained the same and I did my best not to hedge on the dismal reality of her disease.
Eventually she started to relax. Her breathing quieted and the pleading tone in her voice dissipated. The answers were not what she wanted but they rang true to her. She wiped away the tears, her hands steadied and she was able to smile and bravely return to her daughter.
Her heartache was palpable.