The Little Boy In The Children’s Hospital
My third year of medical school, my very first hospital rotation I served on was pediatrics. I quickly discovered that taking care of sick children was a less than charming experience; my Florence Nightingale-like visions of comforting ill children was quickly replaced by the reality of pediatrics: sick children don’t want you. They just want their mommies. You are the enemy. And if the kids don’t hate you, you will hate their parents. All pediatricians know, half the time the parents are the problem, not part of the solution.
The second half of my pediatrics rotation was more specialized: pediatric pulmonology. We saw a lot of preemies with BPD; a lung disease we don’t see so much anymore because of the development of pulmonary surfactant. And I learned about the bane of pediatric pulmonology (and possibly of pediatrics): a condition called diaphragmatic hernia. Babies with this condition have a hole in their breathing diaphragm during development in the womb, which allows stomach and bowel and all manner of things that belong in the abdomen to wiggle their way up into the chest cavity. This in turn can displace the heart and causes the lungs not to develop, because there is no room for them. So the babies can develop normally up until birth, because they don’t need to breathe until then, but once they are born, what do you do with a baby with no lungs? How can that baby possibly survive? A lot of times they don’t, and when they do, they are long term residents of the hospital. Like, years.
How do you put a breathing tube in a baby whose trachea is kinked from everything being pushed sideways? How do you make a hole in the trachea for the baby to breathe, when you can’t find the trachea because it’s so distorted and turned around? There have been some unique approaches to these problems, but these babies are still very, very sick. Sometimes they use an oxygenating technique called ECMO: ExtraCorporeal Membrane Oxygenation. Extracorporeal literally means “outside the body” and they treat the baby like a cardiac bypass patient where they put oxygen in the blood in tubes that carry the blood outside the body. Various types of ventilators have been tried. When I was at Children’s in Birmingham, they literally had a young child in an iron lung, of polio vintage, that was being used to get oxygen in the lungs because the trachea couldn’t be accesed. These children have multiple surgeries in attempt to return the various organs to more or less correct positions – most of which fail or have to be done very gradually with multiple tries.
But there was one child who stands out in my mind. Dusty was his name, and he was a diaphragmatic hernia baby. He was abandoned by his parents at the hospital because they were poor and scared and didn’t think they could take care of him. He never had any visitors. He was three years old and he had been living on the pediatric pulmonary unit since the day he was born. He was a baby who belonged to everybody. The nurses and doctors loved him like he was their own – he was. He had a tracheostomy tube in his neck when I arrived there, and he had it taken out shortly after I started there. He had had it in basically his whole life. He had never eaten real food – he’d always been tube fed. This was an experiment to see if he could eat. He cried. He wailed. He couldn’t eat. He had no idea how to began to eat – he’d never eaten in his life. His comfort feelings came from having a tube filled, not by chewing and eating. He couldn’t be tempted by ice cream, which is relatively easy to handle, or by any other food. The nurses and doctors were despairing that he’d ever be able to eat on his own.
I had no idea that situations like this existed. That parents would abandon a child, albeit a sick one, and leave them as a ward of the state and resident of the hospital, had never crossed my mind. I didn’t realize that some babies can’t breathe because they were born without developed lungs. I had no idea that a baby with a diaphragmatic hernia, loving parents or not, would spend its entire life in the hospital without ever going home. I was floored. Dusty floored me. He was my first inkling that there truly were things on heaven and earth that were not dreamed of in my philosophy. I’d like to say Dusty was eating and normal by the time my rotation on that unit finished, but the truth is more what you’d expect: he still was not able to eat. Or speak. I wonder from time to time what ever became of him. Is he a teenager, still wandering the halls of the Children’s Hospital? Was he institutionalized? Did he die of some opportunistic lung infection? Did he ever get to go to any kind of home? I will never know the answers, but I will never forget the kid who lived at Children’s Hospital.