Philadelphia, Pennsylvania, United States
Sleepy Baby, 1910, Mary Cassatt, Dallas Museum of Art, Dallas, TX, USA
I send my colleague home to kiss her children, then go to the nursery to meet my patient. The obstetrician shows me the newborn’s penis; it will not stop bleeding. Together, we wrap it with a special gauze. Surgicel. The bandage turns a dark black, adhering to the bloody ridge made an hour before. I stand over this baby and permit myself to feel one quick moment of remorse. It is an aching that claws behind my eyeballs. In the way that I see my son’s downcast eyes as he rounds the corner after school and I know without doubt that he has had a bad day, I know that this baby has hemophilia.
I must talk to his parents, fully conscious that my only goal is to deliver bad news with dignity. Empathic. Clear yet vague, because I do not yet have the data to render a diagnosis. I have trained for this. I have sifted through the compassion and the bumbles of my teachers to craft my own art with words. Because it matters to me, I will do this well.
As I walk down the hallway to his mother’s room, I remember what I have witnessed, the things I will not do. I will not roll my eyes at the obstetrician and imply that this is a surgical mishap. I will not slump myself against the door frame while his mother lies in bed and tell her that her son has hemophilia as if I were telling her about a blizzard outside. I will not text my husband about carpool pickup as I walk in the room to introduce myself. I will not let my own eyeball-aching devastation overtake my composure such that I apologize for hardships before I define them, murmuring stock phrases like, I’m sorry to be the one to tell you that I have terrible news about your son. I will not smile. Nor will I promise that this family’s future will be normal and fine.
Instead, I will find his mother steadily rocking back and forth with her son asleep on her shoulder after his long ordeal. One hand under his bottom to protect his injuries while his body leans into her chest, the other finding safety riding the rhythm of his breath. I sit. I put his father on the phone so his wife will not have the burden of telling him. His penis was bleeding, I say. More than normal, I say. We have stopped it, for now. But he needs more testing, more treatment, to both help him heal and figure out why this is happening. His mother nods. This could all still be normal, right? And because I cannot say for certain, I speak of crystal balls and am careful not to lie. I talk about clotting and bleeding, use words like glue and ingredients and scab. I talk about blood tests that need to be done just right. I say the word hemophilia just once, leave it floating as an idea, a possibility. And then, gently, I walk away.
I will go on with my call night, one of those nights where the demands of the hospital give me no chance to eat or even sit. Baby after baby is born in the margins of wellness, demanding my attention. I will almost forget about this little boy, sleeping swaddled in his hospital-issue bassinet, until his midnight diaper change when his needs supersede those of all other patients because he, again, will not stop bleeding. With apologies for the middle-of-the-night phone calls, I speak to a urologist, a hematologist, and his mother who answers the phone with a single moan. The prescription for his temporary cure is rendered by the specialists through the phone line. Wrap his penis even tighter with surgicel. Hold firm pressure for twenty minutes. No cheating.
My mind conjures images of penile necrosis and massive transfusion. I worry that I will not be able to make it stop, that I will need to transfer him so someone else can fix what I cannot. I clean, wrap, and squeeze. A nurse holds a pacifier dipped in sugar in his mouth. His arms are bound in a blanket stamped with elephants. For twenty minutes and forty-nine seconds, I hold his shaft between my fingers. There is not a single penis joke told by the nurses as my fingers cramp. I watch the red second-hand circle round the clock over his warmer bed. I do not release my grip. It works; the bleeding stops. I mention none of these gory details to his mother on the phone, instead telling her only that I have stopped his bleeding. Again. But at just past one in the morning, I and the night shift know without doubt this is not just a surgical complication.
A week later, after my team transfers him to the pediatric hospital for fear of ever removing my hard-won pressure dressing without a urologist nearby, after the hematologists narrow down his official diagnosis to one of two bleeding disorders, after I have slept off the debilitating fatigue of a busy call night, I will visit his parents in his hospital room. I feel a deep attachment to this chapter of their journey, having been there to set it all in motion. I understand it is not my place to diagnose or even treat. I do not work at that hospital. But I need them to remember me even though I met them only briefly. I am there because I need to see beyond the door I opened.
I will sit on the arm of a blue chair while his father unleashes his anger. He rages that no one has yet told him outright about his son’s path forward. What disease does he have? What will it be like, for him? For us? Will he be able to play football? What happens when he is learning how to walk and falls down? Could he die when he loses his first tooth?
I have no answers and provide none as I bear witness. I take stock of his mother who is holding her child. He is again asleep on her shoulder, his breath warming the shadows beneath her chin. While her husband narrates their unknown, her cheek presses against her infant’s closed eye. Her eyes are like magnets drawn to the floor, eyelids protecting them from the glare of an unmapped future. She looks at me, just once. Our gazes lock and in that moment, I receive the piercing gratitude I am seeking. And when I leave the hospital room after hugs and tears and connection, I will leave with the conviction that I have never felt more like a doctor.
RACHEL FLEISHMAN, MD, is an academic neonatologist, a wife, and a mother of two boys. She has been a writer since childhood.