It can be all too easy for those of us who work in the medical field to forget why it is we do what we do for a living. And when we do remember why, it can feel difficult to understand how we face what we face on a daily basis. But during those moments, acutely, when you are really facing what matters in the medical care of children, it is not we that are impressive for doing the work at all.
I have worked in or studied medicine in some capacity for 13 years–from a volunteer in a pediatric ER in college through to medical school, training, etc. At first none of it phased me because I didn’t really comprehend what I was seeing, how it affected people. I was probably too young–here’s a good reason for medical training to remain longer, but I digress. Then as I moved further along in my training, seeing the sick children–oncology patients with hair falling out, ICU patients on ventilators, the list goes on–became difficult to take. It was hard to talk to parents, to see the children every day. It became even harder when, as a resident, I began having children of my own. I could not dream of facing the parents of a child the age of my son (quite obviously, a moving target as he aged) without tearing up. Even when the child was healthy and it was just the concerns or anxiety of the parents that were troublesome, I was able to relate almost too much and their fears would make me fearful, would undermine my confidence and make me doubt my own medical knowledge.
But at some point during my fellowship training, despite eventually having a second child—a girl—thus making nearly all of a children’s hospital identifiable as “this could be my kid”, something changed. I could talk to the sobbing parents of the bone marrow transplant patient who was dying; I could take care of a 4 year old with bacterial sepsis who had the same lisp as my son. Hell, it was really hard but I could and still can do it. Somehow I got over that hump of functioning, of doing my job in the face of some of the worst suffering and sorrow that mankind can conjure up: that of a parent facing the idea of harm to, or even death of, their child.
And we all do this. I make no claims to being somehow unique or superhuman in this regard. Every pediatrician, every family doctor, every pediatric nurse, every child life specialist—anyone who cares for sick children in any capacity—does this. We make ourselves able to go to work every day through some combination of denial (this can never happen to my kid), defense mechanisms (it can be very easy to put up an emotional wall if you practice enough), and even just sensory acclimation (who knew you could tune out screams and cries). The human mind is an amazing thing
And yet, for us, it isn’t. For we go home at the end of the day. Our patients and their families do not.
Right now, my wife is caring for a little girl only a bit older than our daughter who will probably die of a brain tumor. I recently took care of an infant who died from bacterial meningitis, who went from awake with a fever to dead in hours. These are obviously extreme examples, but they are real. The lives of their parents will be forever irrevocably altered. Some families of patients like this are broken and never fixed—they cannot overcome the death of a child; others are changed, bent by the force of such an event and must slowly rebound and reshape into a new normal, whatever that may be. And for the family, the example of the meningitis patient may even be somehow easier to cope with, as sick as I realize that sounds. But that death was quick, with nothing to discuss. For the parents of the patient slowly dying of a brain tumor there are decisions to be made: more chemo? more surgery? Do-Not-Resuscitate? “Full court press” or let her go quietly and peacefully? These are questions about another person nobody should have to answer, let alone about their own children.
As a parent, when I start to think of this, start to imagine what I would do, how I would act, I can’t continue. It’s too much; I know too much. When my wife and I have tried to imagine whether we would allow a DNR or push for more treatment in our own children, it is a thought experiment that even in that setting is too painful to continue. We retreat from it, shuddering. And yet the parents of our patients like this cannot and for the most part do not do that. They come to visit, to sit with their child, to talk to the staff. They are there, in the case of some families, every hour of every day of every week until their child leaves the hospital–either by car or by hearse. There is no break from being a parent or a loved one.
Every day, I go to work in the morning, work my day, and go home in the evening. Most of the time the day feels uneventful—if I take care of a sick child, as I said, it doesn’t faze me as much anymore. And even if it’s a horrible day and a patient is truly very sick or even dies, and I feel that pain and that weight on my trip home, that hurt and burden fairly rapidly diminishes. I kiss my wife, and delight in my own children, and the memories of someone else’s pain fade away to be replaced by my own thoughts of happiness and even relief, and then often a bit of guilt at that relief. And the same story can be told by many, many, many other pediatric practitioners. That story is not impressive. We are the lucky ones. Even those of us who have no family to come home to, we still leave our patients at the hospital.
So on this Labor Day, when we are supposed to think on the achievements of ourselves as workers, and then also when many take advantage of the day off to spend time with family and loved ones, think instead about the ones we pediatricians work for. For many, their time, today on this three-day-weekend, is spent not around a barbecue or picnic table but in the hospital with their son, or their daughter, watching them anxiously as they either get better or do not. They are the ones truly laboring, carrying this horrible load, while we flit in and out and around.
To the parents of sick children everywhere: I cannot possibly pretend to feel your pain, but I thank you for bearing it so graciously and allowing those of us who care for your children to witness the strength of humanity that you show. If there were some way we could fully carry your load for you, trust that we would. In lieu of that: Thank You.
Happy Labor Day; let’s try and make it count.