There is a point of tension unearthed in the care of a critically ill infant. A visceral, know-it-when-you-see it feeling that medicine has crossed a line. Textbooks speak of finding balance between fighting diseases to prolong meaningful life and promoting human suffering to preserve the sanctity of life. Within this teeter-totter is the nuanced beauty of neonatology, the raw honesty with which we counsel families. One of the hardest lessons in medicine is that you never can know how things will work out. We don’t always agree: every doctor feels the weight of this ethical seesaw differently. Even harder is learning, really learning, that your own ethical balance, your own vision of humanity, must fall into stride with the beliefs and desires of the parents you counsel.
I remember my first stint in the NICU. A universe where we examined stomach juice in syringes and mucous-tinged, stool-stained diapers by flashlight in the night. There, mixed in between the growing and the gaining, was a baby who lived to have needles jabbed through the muscles between her ribs daily, draining pockets of murky fluid. Chronically high settings on her ventilator hammered the air in to her chest. The pain of every procedure, every day, took its toll on the team. Nurses begged not to care for her. Senior residents pushed the attending to let nature win out.
The daily burden of her life felt cruel to me.
This baby’s mother was alone, her husband in Afghanistan or Iraq. The distinction was important at the time but now, all these years later, I only remember that he was at war. She was a brand-new mother, fighting on behalf of her daughter. She drove an hour to visit, often coming at night to avoid the data of daytime. I remember how the attending would sit beside her, chairs nestled alongside the incubator, and emphasize the graphic and painful details of the daily needle sticks.
I remember my internal compass pushing for this mother to just understand her daughter’s reality as I saw it. Each time an attending brought up taking a different, more compassionate path forward, the mother shut it down. She was taking her baby home, she would say. Concretely. And she’d unlatch the flaps that covered the portholes into the incubator and put a hand on her daughter’s head, gently stroking it. I imagine her singing in my memory but cannot say whether or not she did. She taught me, then, about hope.
The baby grew, although she did not improve. Each needle left space to inhale. Her father took a brief leave from his service to meet her and we forced him to face a different type of war. The war in our NICU was about the pain of surviving; how much can one tiny baby endure. The pain of needles seemed farcical compared with the pain of severed limbs and shrapnel removal. He was a father; his daughter was a fighter.
I learned that the point of my own compass had to yield to the directions of this infant’s parents. I watched as the team shifted rhetoric to fight with them, to fight for her. We championed the sanctity of life, of family, of survival. We moved her from one hospital to the other. She went from a room with five other babies who all, eventually, went home bottle feeding, to her own hospital room. We cut a hole in her neck once we stopped piercing holes in her sides. Her mother moved from the military base to that room, her days measured by suctioning secretions and pausing alarms. She had no family nearby. No friends came. The ebb and flow of her day, her journey, defined by the rhythm of beeps, the careful measurements of medications, the silent crying specific to a tracheostomy.
Unlike so many cases that haunt me, this baby did not die. At least, not then. Almost a year after her birth, weaned from needle sticks, with a machine pumping life through a tube in her neck, she went home. She could not smile. She could not sit. Her eyes disorganized in their movements. Child life specialists hung balloons of pink foil from her crib. Her father had come home from war. We had done everything to send this child home, to form a family. Everything. And I had learned the discomfort that comes without paternalism.
Many years later, this time as the attending, I met with a woman several months after the death of her son to review his autopsy. I’d done this only a few times before. His mother arrived disheveled, teeth and hair chronically un-brushed. She had gone to his birth hospital just that morning looking for a blue bear she remembered from his time there. It had long been thrown out. She let out a slow trickle of tears. She wanted an answer. Not about his cause of death, but about why this had all befallen her.
This woman taught me about life after the death of a child. The odor of mildew and sweat; she showed me the pervasive despair of waking up every day knowing that you have outlived your offspring. The lost promise of fresh powder-scented diapers and curdled milk and the soft snuggle of heavy head against chest rocking in the grey shadow of night.
We went through his autopsy, and the story of his life. We talked about his heart. The problem, cardiomyopathy, is often genetic. We drew pictures. I implored her to see a geneticist, to have testing done on herself, to learn if this could happen to another one of her children, should she have more. Wallowing in her grief, however, made her feel close to her son. An end to grieving perhaps meant that he was really gone.
I left after the autopsy review thinking of the military mother from years prior, whose daughter would have been a teenager by then if she were still alive. With her life we abated the ache of a loss that never heals. I left this meeting understanding, truly, for the first time how women whose children die will wake up in the middle of the night, pining over the loss of their children, forever. Some parents go home to an empty nursery with crisp paint on the walls, stuffed bears along the window sill, perhaps a lamp with moons hand-painted on the shade.
Compassion is taught to medical students in concrete actions. Sit down, eye contact, talk less, pause, recap. Touch a hand. Cry if you need to. As if these boxes can be checked off, one by one, toward reward. Gravitating toward death, toward social suffering, is a choice. Inserting yourself in the vacuum of need. Listening, truly listening, to find the balance between the meaning and the suffering. And accepting that the teeter-totter may not always tip your way: these are lessons never conquered, but I am learning, daily, how to listen.