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Dealing with unanticipated death of an infant patient
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Let the river rock you like a cradle
Climb to the treetops, child, if you’re able
Let your hands tie a knot across the table
Come and touch the things you cannot feel
And close your fingertips and fly where I can’t hold you
Let the sun-rain fall and let the dewy clouds enfold you
And maybe you can sing to me the words I just told you
— Ritchie Havens, “Follow” (lyrics by Jerry Merrick)
Why are you still crying?
Your pain is now through
Please forget those teardrops
Let me take them from you
The love you are blessed with
This world’s waiting for
So let out your heart, please, please
From behind that locked door
— George Harrison, “Behind That Locked Door”
Pagers have proved a useful addition to call responsibilities. My practice was a late adopter, using an answering service until earlier this decade — cumbersome perhaps, but providing a human voice on the other end of a message rather than text on a backlit screen. Efficiency eventually won out. Unfortunately, some days I would rather have heard than read.
I was rounding in the newborn nursery a few weeks ago congratulating new parents on the birth of their first child and anticipating the usual busy Monday morning office when the pager displayed the message in typical layout: (from) Fletcher Allen Hospital; (patient name); (age) 8 months, (regular physician) patient of a partner; (message) IN ER ARRIVED DECEASED.
Finishing the joyous visit with the dread of the next, I made my way down the stairs to the ED. A great emptiness enveloped me as I searched for the proper role. Death was not foreign to me. Patients died. Usually in hospital — sick newborns with congenital defects, trauma, and deaths in intensive care units. I ran a cystic fibrosis clinic in an earlier era where managing death was a critical mission. I helped create and staff our pediatric critical care unit here in Vermont. But sudden, unanticipated death of a previously well baby is always horrific.
William T. Gerson
I tried to remember the last time I made this particular trek; more than 10 years, more likely 15 for a case of SIDS, again an early morning call. In the ED, I made my way to the closed-off room. I am told that the child had been ill for several days but was put down to sleep that night without difficulty and was discovered cold and blue in the morning. The parents and the father’s parents are in the room.
A father, a former patient
As I enter, the grandmother turns to me from her kneeling position next to her son who is holding his child, the baby’s mother next to him wrapped in a blanket against the pervasive coldness of the room, eyes on her daughter. Both parents are seated. The grandfather stands next to his son caressing his back. It is at that moment I realize that the father was until very recently a patient of mine. I immediately see the father in flashbacks to an earlier time sitting in my office next to his own mother, his was not an easy childhood, school was difficult — but now the tandem in front of me was a grieving father and grandmother.
Their eyes searched mine with both recognition and hope. My eyes witnessed only death. Why was the baby so cold, so blue? In her father’s lap, her eyes were open but vacant, limbs stiff, livedo evident. The grandparents were comforting their son and daughter-in-law, both overwhelmed in tears, agonal cries, and desperate pleas for the dead to return to life. I could only touch, hug and attempt to balance empathy and reality. In the end, I attempted to provide compassionate acknowledgment of their profound loss. This patient died of overwhelming meningococcal sepsis and meningitis.
I hadn’t faced multigenerational loss so closely in practice, and certainly not so abruptly. As a grandparent myself, the immensity of the loss was far too evident. Hopes, dreams, love all coming to a crushing halt in a sterile ED bay.
This time was different
The suddenness of this death was a severe shock. Intensive care deaths feel different, mostly controlled, and while tragic, usually not suddenly unanticipated, as were the deaths of terminally ill cystic fibrosis patients. Even sudden traumatic deaths in the ED seem different, death as a product of a failed resuscitation, not a failed life process. As soon as I saw the infant, I confronted the memory of my first autopsy patient as a medical student, a 9-year-old girl who died of Reye’s syndrome. Her body was also cold, blue and mottled her eyes unseeing. Other patient deaths, funerals, scenes of bedside grieving sprung relentlessly into my thoughts.
Where do we lock away the deaths of our patients and how do we retrieve them, or they reclaim themselves, with such enormity? From where do they return, rolling out of their sequestered lair when confronted yet again with such terrible grief? Perhaps residing in a favored place available for rapid and, hopefully, useful recovery, I would like to think because of the practices we have created, trained with and taught surrounding the death of a patient. I owe so much to the neonatal and pediatric intensivists at Boston Children’s Hospital who taught me as a resident how to engage with death.
In my own way, as for most of us, I have reconciled my personal emotions with the professional responsibility that the most important task going forward is a continued commitment to the longitudinal care of this patient’s family — former parents, former grandparents and, hopefully, further children.
As we begin a new year, I must thank my partners, equally bruised by these events, and my pediatric colleagues, whose touch expresses their deep understanding about what it means to be physicians — not only at times of loss but at times of life.
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Disclosure: Gerson reports no relevant financial disclosures.