Trust is a Two-Way Street: Lessons Learned from a Dying Child

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I looked at my watch: 7 pm. One phone call left before I could go home, but I hesitated before dialing the phone. My stomach was in knots and I had to collect my thoughts. I was going to have to tell Chelsea’s mother tonight that I expected her daughter to die in the near future. I knew Chelsea’s kidneys would fail outright someday, but in the past Chelsea had pulled through so many lifethreatening illnesses seemingly unscathed that her parents and I had practically come to expect miraculous recoveries as routine. Two days earlier when Chelsea developed yet another UTI, I put her on antibiotics and didn’t think much of it. But tonight she was sitting at home lethargic and sleepy. It was the first time she had showed signs of uremia, signifying that her kidneys were starting to fail for good. The lab report sitting on top of her four-inch-thick chart confirmed our fears: sodium 122, BUN 129, creatinine 9.1. It looked like the end of the road was approaching. No one had expected Chelsea to make it this far. She was born at 32 weeks gestation with bilateral ureter obstructions and dysplastic kidneys. Chelsea’s NICU course and subsequent post-operative complications left her with severe developmental delay, failure to thrive, and an irreversible course towards chronic renal failure. She was not a transplant candidate and her parents had declined dialysis because of the involved risks and discomfort, yet she had already made it past her sixth birthday. Amazingly, Chelsea hadn’t been admitted to a hospital in several years. When she was three years of age, Chelsea had had a difficult time being extubated after a tonsillectomy and adenoidectomy, and Chelsea’s mother had promised her she’d never return to a hospital. Through a combination of meticulous home nursing and a level of devotion from her parents that simply boggled the mind, Chelsea stayed home through infections, critical potassium levels, and episodes of fluid retention and anuria.