In Over My Head

I had to do something today for which I felt totally unqualified. It had nothing to do with my patients or procedures but everything to do with my lack of years in this field of neonatology. I've explained before that I am a general pediatrician (and proud of it) who wears a neonatology hat for a living. At this point in my career, I feel pretty darn comfortable with it too. Gone are the surges of adrenaline everytime the phone rings and we are called to a delivery. Gone is the should I call for help or should I tough it out on my own internal struggle. I no longer feel like a minor leaguer playing in the majors. Until today.

Today I was asked to speak to a woman pregnant with twins at 23 weeks gestation about what to expect if she were to deliver in the next 24 hours. I don't need to give you the statistics, but the chances of these babies surviving is small and the chances of them surviving without any disability is slim to none. The gestational age is so early, in fact, that we give the parents the choice of whether or not we attempt to resuscitate the babies at delivery. Parents are completely within their right to allow the infants to pass peacefully, without the long and painful torture of hospitalization and a certainly uncertain outcome. So, I was asked to speak to this couple about their long sought after twins and help them to come to a decision. They would listen to what I had to say and then make the hardest decision of their lives.

There I stood, armed with my statistics in hand and a description of what constitutes a major disability vs a minor disability. I had all the information I needed yet knew absolutely nothing. I watched them listen to my words with tears in their eyes and struggled to keep my own opinion and my own bias out of the inflection of my voice. I wanted so badly to say, "I don't know what you are going through or how you feel but here is what I do know, because I see these babies day after day and month after month and I see their parents at their bedside for every setback and procedure and infection and I see the weariness in their faces and the strain on their marriages and I see their children with tubes and lines and tracheostomies and open abdominal wounds and blindness and blown veins and I see how overwhelmed they are at the prospect of taking their developmentally disabled and medically complex child home with a list of specialist appointments to be made and I see. I see. And I know you can't possibly know what to expect based on these statistics that i've given you. I know and i'm so sorry."

The truth is that I read them the book when what they really needed was to hear the story. The truth is that I don't want them to make their decision based on what I tell them. The truth is that I felt that my hands were tied and I don't have the experience or courage to tell them what I really want them to know. I just pray they make a decision that brings them peace over the coming dark months. Regardless of the outcome.