The young couple sitting before me found themselves lost without words. Their son was just two days old, and he had not uttered a sound or a cry since his entrance into this world. What should have been pink newborn skin had been completely replaced by a translucent, crepe-like covering that oozed and dripped in places with open sores. Each breath in and out rattled, suggesting that something was partially obstructing his airway. His rib cage caved inward with each inhalation as he struggled to get the oxygen he needed. The simple act of breathing was exhausting him.
A decision had to be made. What could they do? What should they do? What should we do?
Neonatal medicine, or medicine that focuses on the beginning of life, sometimes presents unanswerable questions. Practitioners and parents have to care for struggling patients who are in significant pain. Decisions need to be made not just about their quality of life but also the potential end of their life. And there is no rule book to lean on. (These challenges are shared by practitioners of geriatric medicine—though one expects end-of-life conversations to happen with the elderly. Not so with newborns.)
For a patient’s loved ones, these conversations and decisions are usually a first-time experience. But as physicians grow older and gain experience, patterns present themselves. The abstract set of possible choices is replaced with concrete memories and examples. While such experiences do not reveal specific answers or provide a clear path forward in each individual family’s journey, they offer an embodied wisdom that can help parents see beyond the difficult present moment.
This infant had a rare genetic condition called junctional epidermolysis bullosa. As I talked with his parents and listened, I was drawn back in memory to another family who found themselves in a similar circumstance before, needing to come to terms with a child who had this condition. Affected children have a genetic mutation that prevents the top layers of an infant’s skin or inner linings from adhering to the layers below. Many children with this disorder die of skin infections or breathing difficulties as the superficial layers slough off and form obstructing plugs in their airways.
But that child from years ago had not died. He was now in middle school, after years of medical conversations and procedures, where I had the opportunity that time provides to get to know both parents and child. I remembered their first request for me to take a look down their young son’s throat to see why his breathing was so laboured. I remembered removing a sloughed plaque and seeing their relieved smiles when they listened to him in the recovery room. I also remembered them bringing him back to the operating room over and over as the plugs kept returning.
And in that situation, one set of conversations became two as mother and father found themselves more and more distant from one another in this shared experience. They eventually separated and divorced: too many years of caring for those open wounds; too many weeks spent in the pediatric intensive care unit; too many nights in a carefully constructed bed to help prevent even more skin ulcers from emerging. Too many difficult decisions where one parent leaned one way and the other another. Just too much everything. All of it forever shaped by that one conversation so long ago: What could they do? What should they do? What should we do?
This new set of parents was clearly overwhelmed with the decisions surrounding their newborn son. They discussed what it would mean to not take a look at their son’s airway to see what might be blocking it. Would he be in pain? Would they be wrong to just see how he did on his own? Faced with unanswerable questions about the extent to which they wanted modern medicine to intervene, they fixated on the present moment instead. They wanted to be in the ICU at all times in case something might change and a decision needed to be made then and there, but they also felt terrible for not being at home at night with their two-year-old daughter. When we tried to assuage their parental guilt by explaining that their daughter was not at a developmental state to understand such suffering, the mother described coming home to find her daughter pointing at her and saying, “sad, sad, sad.” As a parent myself, I felt the wounds that little repeated word inflicted. “What should we do?” was replaced with “We just can’t do this. We can’t make our house into a hospital. We have another child we need to care for. We can’t. We just can’t.”
The mother described coming home to find her daughter pointing at her and saying, “sad, sad, sad.”
When learning to take multiple-choice tests, we are taught to trust our first educated guess and not to doubt ourselves. As the medical team emphasized that there were no right or wrong answers and we wanted to respect their wishes, nevertheless I wondered if we should push them to intervene, to define as “normal” measures what they were considering defining as “extraordinary.” And what if I did not guide them in that direction, but recognized and even endorsed their parental prerogative to make the choice not to intercede? Every parent makes decisions for their children during normal day-to-day life that influence and shape their children. Many a parent frets over the smallest of these decisions due their resonant potential. Now imagine a parent struggling to decide whether they should allow their newborn child to die without taking extraordinary measures to try prevent that infant’s death. At its darkest read, this choice to “allow” their newborn child to die would permit these parents to determine a different course for their own lives and that of their young daughter. Whatever choice they made toward this infant’s life or death represented a new branch of a vastly different set of unfolding narratives. Yet there was no way to know how either set of narratives would unfold, no guarantee that one future or the other would be better or easier for them.
It was so very difficult to guide this family, yet so very important to support their choice, whatever that might turn out to be.
Once more, I thought of the first couple in my memories. Of the years they had spent together, then more recently apart. I thought of the hours and days and years they had spent tirelessly tending to their son’s painful ulcers. I thought of that son, alive, who always seemed to smile at the world and who never failed to raise his thumb at me when I saw him. Alive, who could not walk and could not speak. I understood the choice his parents had made that fateful day, but I also knew the deep pain of that family’s journey together. I wondered how they would answer the same questions if asked today. How would they guide this new set of parents? What would they say?
A long time ago, the philosopher Socrates said, “All I know is that I know nothing.” Also long ago, though not quite so far back, Paul, sending a letter to the Corinthians, wrote, “Now we see through a glass, darkly; but then face to face.” It’s not exactly true that modern medicine “knows nothing”; health-care practitioners know how to diagnose and to treat that which is treatable, and modern science is working hard to expand that body of knowledge. But there is wisdom in each of these statements. The more we seek to learn about this world and our bodies in it, the more we realize the limited boundaries of what we can know. Modern medicine remains in the dark when it comes to knowing how best to guide parents and patients through the subjective experience of chronic illness, chronic pain, and chronic conditions.
I am neither a philosopher nor a theologian. I remain rooted in the halls of medicine. In those wards, I often find myself in situations without “correct” answers, where the looking glass of how present-day choices will play out in the future remains persistently murky. Both sets of parents I encountered found themselves caught in the immediacy and darkness of the present, and yet they were forced to make decisions about the future then and there. What role can medicine and its practitioners play if we can neither know nor predict the future with all its possible permutations? To what extent should we intervene? What would that child’s life look like if we did? What would the lives of the parents be like? What are the ripple effects of those critical decisions? If we knew the answers to those questions, would that knowledge lead us out of Paul’s darkness? Is this the “face to face” we so desperately seek?
The more we seek to learn about this world and our bodies in it, the more we realize the limited boundaries of what we can know.
Consider a medical read of those famous words of Paul: “Now we see through a glass, darkly; but then face to face.” How might we translate this wisdom into the halls of medicine? For me, the answer lies in how medicine defines “face to face”—for a life spent practicing medicine offers a collection of such face-to-face encounters, from which an engaged practitioner can listen and learn. When we allow ourselves to relive and remember those past encounters, then “face to face” becomes “face to faces” as the collective wisdom of all those who have walked these difficult paths before attends each new encounter. It requires a newfound relationship with time and a willingness to embody those past encounters—but it also offers a glimpse of light breaking through darkness.
In this understanding, medical practitioners become not simply sources of medical information (the age of canonical medicine, where doctors absorb vast amounts of knowledge from medical tomes to share with patients, has long passed with the age of the internet anyway), but something beyond curators and interpreters of the known. Where modern medical practitioners may find their most potent roles is when they learn to absorb and embody the collective memories of individual patients and parents.
Where modern medical practitioners may find their most potent roles is when they learn to absorb and embody the collective memories of individual patients and parents.
As a pediatric surgeon, I diagnose, I cut, I cure—when I can. I know my limits. While there is plenty I have learned during my training and over the course of my practice, there is much I do not know, especially when faced with children with chronic conditions. Patients and doctors alike so often want that crystal ball to see where their decisions will lead. Yet I think of the words of Søren Kierkegaard: “Life can only be understood backwards, but it is lived forwards.”
Often in times of medical difficulty we wish to speak to patients and parents who have lived their own lives forward, to learn from them, but those people are unavailable to us. Or so we think.
I have learned to live in a world where our present-day decisions are made in medical wards enshrouded by dark glass. Yet when I allow myself to transgress time, to collect together all those faces I have encountered before and remember their stories, I recognize that part of them remains within me—forever face to face. It is my belief that nurturing those voices, allowing for their shared experiences to be relived and remembered through me, can help transport us out of the paralysis of the present toward a more expansive experience with time, wherein medical practitioners are guided by past patients toward being better guides ourselves.
This essay reflects the author’s present recollections of experiences over time. Some names and characteristics such as age and sex have been changed to anonymize the characters, and some events have been compressed.