Chronically Ill Children

One of the reasons why I decided not to go into pediatrics or pediatric anesthesia is because I have trouble seeing chronically ill children. Although perhaps more "medically interesting," kids with severe debilitating medical conditions are really sad. It can be emotionally exhausting and tough on caregivers and providers to work with these patients who are slow or may never get well. While we all know, have seen, and understand the 90 year old with heart disease, dementia, and debility, seeing a 3 year old who cannot walk or talk is never easy. Unfortunately, this population of children often need a lot of surgery.

I got to know a three year old with a history of seizures and craniopharyngioma quite well. Over my month on the rotation, I took her to the operating room three times for the neurosurgeons to remove an infected VP shunt, place a new one, and adjust it. Neurologic debility in children is devastating. Whereas children with congenital defects in other organ systems may still interact, play, and communicate normally, children with brain tumors, developmental delay, or severe epilepsy can be emotionally tough to care for because they don't make the same bonds. Even older children with neurologic disease have altered relationships. I met a teenager with Lyme disease who had a perfectly normal childhood, but upon developing chronic Lyme, regressed into infantilization.

I saw a lot of caregiver burnout, parents sleeping in the ICUs, at wits end. Working with these patients reminds me that our role as physicians is to take care of the family as well as the child. For any parent, the worst nightmare is taking their child into the hospital for surgery. I held the hand of a sobbing mother whose three year old was bitten by the neighbor's dog who told me that watching us take her injured child into the operating room was the hardest thing she'd ever done. I've gained a real appreciation for pediatric caregivers - anesthesiologists, surgeons, specialists - for their emotional fortitude.