Editor’s note: This essay, initially published a year before the emergence of the global coronavirus pandemic, takes on new meaning in light of the failure to find common language around Covid-19.
Medical parables are day-to-day stories passed down from doctor to doctor across an operating table, between seeing patients on rounds, or while changing into scrubs in the locker room. Through humor, sarcasm, and sometime grisly recountings, these stories pass along information and culture not found in any textbook.
Sometimes the message is clear and obvious; other times the lesson lurks below the surface, dull now but ready to gleam with the right context.
A good friend who runs a pediatric intensive care unit (PICU) in a Boston-area hospital once told me a story that later blossomed into a parable for me when I spent a week on a medical mission in the Dominican Republic.
A young boy was admitted to the pediatric intensive care unit because he was having trouble breathing. Caring for a child in the PICU also means caring for his or her parents and understanding the enormous stress they experience seeing their child in such dire straits. These parents struggle with a deep sense of powerlessness.
When the team came to examine the 7-year-old, his chest heaving and clearly laboring to breathe, his mother seemed oddly unconcerned. “My son is the Lord God Jesus Christ. He will be fine,” she announced.
Even in a busy intensive care unit where just about everything that could happen has already happened, her pronouncement was a showstopper. According to my friend’s recounting, it wasn’t clear whether the boy’s mother had some deep-seated psychiatric disorder or whether this experience pushed her over toward psychosis.
The PICU team believed she needed help. But how best to help her? How should they engage someone whose response placed her so outside the norm and squarely in some “other world” of delusion?
With no obvious answers, the team called for a psychiatric consultation. It wasn’t long before a thin, bespectacled psychiatrist entered the unit. He listened quietly and attentively to the PICU team’s concise recounting of the situation, and then asked to speak with the mother.
She told him the same thing she had told the PICU team, that her son was the Lord God Jesus Christ. The team readied itself for the psychiatrist to excuse himself and discuss with them the range of possible medical and psychiatric intervention for the mother and how then to proceed to care for the boy. Instead, he pulled up a chair next to the mother and, when she reiterated who her son was, he quietly replied: “You must be very proud.”
I thought of this story and sought its moral while in the Dominican Republic to help children infected with a virus that causes juvenile recurrent respiratory papillomatosis. This currently incurable disease continually produces grape-sized lesions in the airway, causing children with it to first lose their voices and then to struggle to breathe.
Our team had traveled to the Dominican Republic to help teach local doctors how to improve their care of these children. But we also hoped to take samples of these growths and bring them back to our labs in Boston, where we were working to find a cure.
On the first day of the mission, we met the children we would be helping care for over the next week and their families. We gathered the parents and told them of our plans for their children’s care, and also about our study. We then met with each family individually.
In Boston, when I told parents about our study, I was usually met with a barrage of questions that often ended with something like, “When will a cure be available?” That question would certainly be one of my first ones if I had a child with juvenile recurrent respiratory papillomatosis. But it’s also one that forces me to step back, temper my enthusiasm for our research, and explain and underscore how frustratingly slow the pace of research sometimes seems as we struggle, not only to innovate and find cures, but also to be safe.
I was ready for the questions I had been asked before. I was not ready for one mother, seemingly young enough to be my patient, quietly telling me that our research did not make sense because her son and the children of the other parents were not infected but were cursed because of “sins” she and the other parents had committed. I wondered if she was referring to the fact that juvenile recurrent respiratory papillomatosis is passed from one adult to another through sexual activity, and then, most often, from mother to child when a mother has active disease and the child passes through the birth canal and becomes infected. When I pressed her for some explanation for these “sins,” she cited a short passage from Exodus in which the sons and daughters of idol worshippers suffered and were afflicted due to the sins of their parents.
I’ve spent almost 20 years as an academic surgeon, caring for a wide range of children and their parents and training younger generations of doctors not only how to care for children but how to interact and talk their parents. Yet I found myself at a loss for how to respond to this woman. I’m no religious scholar and often feel that, when modern medicine confronts religious belief, the resulting debate might as well take place in the ancient city of Babel, where strong opinions are voiced in languages the listeners simply cannot understand.
Standing in the early morning heat and humidity, I was rendered mute. Modern medicine provides so many answers and so much hope for cures. But the roots of medicine can’t be traced back solely to science. They also grow in the underlying soil of human connection; the power of human touch; the ancient, fading art of physical inspection and diagnosis; or the linguistic connection of one human searching to find a way to hear and accept another’s story, wherever that story might lead.
To simply reject someone’s story as strange, other, alien, psychotic, overly religious, or disturbed is to create a barrier rather than allowing a door to open, if just to reveal a crack or possibility.
Thinking of the psychiatrist’s unexpected and brilliantly connected response in the Boston PICU, I strained to remember what little I knew of my own readings of the Bible so I could answer this mother in her own terms. My memory was that the children of idol worshippers were cursed not because of their parents’ sins, but rather because they themselves continued to worship idols.
I silently disagreed with her that she and the other parents had sinned by catching a sexually transmitted disease that had infected their children as they were being born. But I could not argue with what she viewed as her own sin if she truly believed that about herself and the other parents. I knew enough Spanish to take a medical history of my patients and talk with them, but not enough to engage in religious debate. So I asked one of our translators to help go a little deeper with this mother and talk with her about how her child and the other children had themselves sinned. I tried to use her own story and explore that.
“It seems to me there may be two types of children,” I said to her. “One whose parents worshipped idols and then the children sinned by continuing to worship idols. But what of those children who came to believe in God and who were not themselves idol worshippers? Weren’t they instead innocents caught in the crossfire?”
I hoped this mother would hear my primitive religious argument, even if it didn’t bear up to scrutiny. After what seemed to be an interminable pause, she took a long breath and said, “Maybe.” There was the hidden crack of connection that let our mission go forward.
One of my favorite childhood authors, Isaac Asimov, once wrote, “Your assumptions are your windows on the world. Scrub them off every once in a while, or the light won’t come in.”
Like the PICU team in Boston, I first assumed that this mother was delusional and should be treated as such. I also assumed I could convince the parents of the children with juvenile recurrent respiratory papillomatosis that I met and cared for in the Dominican Republic that our modern medical and lay cultural ways were quite simply the truth.
When the psychiatrist told the mother that she must be very proud her son was the Lord God Jesus Christ, he didn’t register any surprise when she quietly responded, “I am.” Instead, they went on to have a long conversation about her son’s care.
I continue to be grateful for my friend’s parable of the PICU, for the lessons I learned from its psychiatrist, and for how both helped me forge a human connection where I couldn’t envision one. The ability to find a common language, to engage and explore in the struggle to bridge the “other,” remains a strong and powerful tool in medicine’s ever-expanding arsenal.
Christopher Hartnick, M.D., is a professor of otolaryngology at Harvard Medical School and director of pediatric otolaryngology at the Massachusetts Eye and Ear Infirmary.
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