When My Son's ‘Long Case’ Brought a Medical Resident to Tears

As we sit staring blankly at the monitors, there is a subtle, apologetic knock on the door. A sweet, polite face appears at the entrance to the  hospital room. She introduces herself. She is a young doctor in the final leg of her post-graduate studies, only months from realizing her dream of becoming a pediatrician. She has a quiet, caring tone. Our son lies in his hospital cot sleeping deeply, recovering after yet another grueling anesthetic procedure.

The doctor explains that although she is not involved directly with our son’s care, she would very much like an hour of our time to learn about his medical history, to use the information she might gather for a so-called “long case” presentation for her upcoming exams. Our boy is complicated – very complicated – and is exactly the sort of child that, if medically summarized well enough, could help her achieve impressive grades.

This is the third such request of the week. It appears he is in high demand. It pains me to admit that my darling boy qualifies as a “long case.” But there is no denying it: nothing is simple in his world, nothing straightforward, nothing that anyone but the most reputable of specialists can explain. Medically he is a conundrum: his rare chromosomal disorder has never been seen before and there is no listing in the textbooks for many of his issues. He is a perfect case study, it seems.

My husband courteously excuses  himself and leaves the room. The emotional drain of yet another retelling of the events of the last few years is not something he can face today. Although he has no objection in principle, he senses the need to protect himself and takes the opportunity for a well-deserved break from the ward. I agree to help out again, not because it is any less taxing for me, but with a medical (veterinary) background myself I firmly believe in the intrinsic value of exposure to real life cases for professional development. I seem to have developed the ability to separate my emotions from the medical facts, at least some of the time. And more than that, doctors need to know about children like my son who defy the odds. In order to help them in the future, they need to understand what they have overcome. Today I’m up for that chat on his behalf.

The interview begins with a series of standard questions: What are your son’s diagnoses? What medications is he on? What specialists does he see? I rattle off at least a dozen diagnoses, the names of nearly as many medical teams that are involved in his care, and she soon runs out of space on her notepad. She looks temporarily overwhelmed by the complexity, but I continue with my stream of information – detailed, structured, comprehensive. In some ways it is therapeutic. This is my son’s life, but it is one we can rarely discuss in detail with family or friends without inducing expressions of complete confusion: it is a life and a reality few understand. It is nice to talk with someone who genuinely wants to know more.

The discussion turns to milestones. Milestones? “Not applicable” is my instinctive response – a protective mechanism to avoid facing the truth about his delays. We don’t talk about milestones. Two consecutive days without choking, a winter without a hospital visit, a seizure-free weekend – these can all feel like significant achievements. But that isn’t really fair. He has achieved milestones, but the ones we boast about are on a completely different scale to the ones described in standard early childhood development classes. Our son is nearly 5 years old and he has a developmental age of 3 months. The typical milestones of crawling, walking and talking are not likely in his future, so instead we focus on the things he can and does achieve.

After exploring his world of therapy and support services, the questions soon turn to those of a more personal nature: How did it feel to get the diagnosis? This is where I start to feel uncomfortable, emotional even. How can I explain how that feels… when my baby was just 7 weeks of age? It is almost impossible, but I do my best to articulate the shock, fear and helplessness we felt at the time.

And then finally we reach the dreaded last section of the template… What about the future? What is the prognosis? “Not expected to survive infancy” is the phrase we saw on a genetics paper in that office that day. Well, he has survived infancy now. What next? We don’t know; in all honesty no one knows.

As I explain how the uncertainty has led to a need to literally take it one day at a time, her expression changes from one of professional interest to a softer tone. Her complexion reddens and her eyes fill with tears. She apologizes profusely for having to ask such personal questions and appears embarrassed by the spontaneous emotion. Before she can reach for the tissues, tears are streaming down her face. I find myself in the curious position of consoling a doctor about my own son’s future, reassuring her it will be OK.

She listens and empathizes. The conversation continues and we talk about his genuine happiness: how he consistently accepts every new challenge with a determined smile, how he charms all of his nurses and teachers with a cheeky grin and how he often giggles uncontrollably while simply listening to a silly story or watching friends dance. Her reaction validates the tough days, the days when you hide your worry for fear he might see it in your face. She smiles at him kindly through her tears as he wakes, and in that moment I realize she is going to make a great pediatrician.

It is true that medicine is both a science and an art; genuine empathy is one component of the art that needs to be shaped and honed, regardless of one’s natural personality. I have been fortunate to have met many talented doctors on this parenting journey; the outstanding ones have, in fact, been an integral part of our family’s life. Those who, without prompting, allow themselves to feel what the patient might be feeling and acknowledge how their recommendations and attitude impact on the patient’s day-to-day life and those in their caring circle are those who really make a genuine difference.

I truly hope our “long case” helped this doctor pass her assessment, but more importantly I want my son’s story to stay with her, and help shape the compassionate pediatrician I’m sure she will become.

Later, when my husband asked how it went, I told him that the future of medicine is in good hands.