“I’m sorry to have to tell you this news,” I said to the couple, who were hugging each other as their baby slept in his bassinet. “I know it is very hard to hear. But I want you to know that we are here for you and your family, and our team will walk every step of this path with you.”
There is no easy way to tell a parent that their child has a life-changing or life-limiting disease. Sometimes parents have questions. Sometimes they cry, sometimes they just sit there, shell-shocked. But the best conversations are the ones that are a beginning rather than an end. We tell families that we will be there for them. We tell them we will do this together. We tell them we will be there, now and in the future, to help their child through situations they never imagined they would face.
Except as a resident physician, I won’t be there. It is the nature of our medical training system that we rotate, month to month, gaining exposure and experience in multiple different fields to become the well-rounded pediatricians we aspire to be. But it is also the nature of our system that it’s us, the residents, that are the ones on the front lines of patient care. We are the ones who first see the UA with glucose and 3+ ketones, or the EEG report with spikes and waves, or the abnormal newborn screen. Usually, after we call the consult and confirm the diagnosis, we are the ones breaking this news to families. The consult team will be in tomorrow, and they’ll have more information. But I can’t wait 12 hours to tell you the critical results that you are anxiously awaiting.
In that instant, I know something you don’t know, and while this information doesn’t change my life, it will alter yours forever. And here I sit in front of you, meeting your pleading eyes at the moment before your life transforms. How cruelly, desperately unfair. My education and my lab tests have stripped your future bare, laid it out in front of me in a sea of MRIs and electrolyte trends, painted me the picture that matters most to you. What right do I have to know the intimate details of your child’s cells, his enzymes, the ebb and flow of his fatty acid levels, when you grew those cells inside yourself, loved them and cherished them, and hoped and prayed for them before they were even born?
Yes, it is serious. Yes, the EEG showed seizure activity. Yes, his newborn screen was confirmed. Yes, yes, yes.
I am not the specialist, and I’m not the attending, and I’m not the expert in your child’s disease. If your child has diabetes, I know enough to answer your questions and reassure you, and although this disease is life-altering, we have treatment and next steps to discuss. But what if it’s Neimann-Pick disease? What if it’s Rasmusen encephalitis? What if it’s adrenoleukodystrophy? How do I give you this diagnosis when all I know about it comes from bleak articles on UpToDate and GeneReviews? How do I describe the picture your child’s data has painted, when I’m hoping for your sake I’ve gotten half the colors wrong? If there’s the slightest chance tomorrow’s consultant will bring you rose-colored glasses, I can’t show you my gray, dismal scene. But neither can I leave you in limbo on your pull-out NICU cot, knowing I have crucial information that you have the most right to know.
So I give the diagnosis as I’ve been taught to do. I state it clearly. Pause. And search for something positive to say, something that will make you feel taken care of, because you will be taken care of by a whole team of specialists and a top-tier children’s hospital.
But not by me. As much as I care about you and your child, I won’t be there to walk this path with you. I’m the person who pores over his vital signs in the morning and watches his tiny ribs pull in and out as his oxygen support decreases. I’m the one who translates our medical jargon into a plan for the day and cheers for every milestone he accomplishes in our strange, incubated, ventilated world. I’m the one who gives you this bad news. Who hugs you while you cry. Who stays late emailing specialists and talking to nurses, and printing resources in Spanish. I’m his doctor.
But only this month.
Emily Kemper is a pediatrics resident.
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