Patients don’t read the textbook ~ Medical truism

By the end of my second year of medical school, I ceased to be surprised by the ways that human biology can go awry. Instead, having studied the seemingly endless complications that can emerge over the course of human life, I marveled at how often it all goes smoothly.

After countless hours spent attempting to understand (or, at least, memorize) humanity’s various physical ailments, I didn’t expect my own life to proceed without bodily complication. Like most medical students, I anxiously observed a parallel between the diseases I was studying and my own experiences, wondering whether an involuntary twitch of my finger might signal some catastrophic underlying disorder.

I had read the textbooks – zealously, multiple times.

I was interested in general full-spectrum practice, so I soaked in as much information as I could retain, about as many topics as possible. As a first-year family medicine resident, I strove to keep abreast of the latest guidelines and research updates, hoping to compensate for my lack of experience with an abundance of up-to-the-minute knowledge.

Once I became pregnant, I had accompanied patients through enough tragic outcomes to be morbidly concerned about a poor outcome for my own pregnancy.

“As long as you don’t use drugs and avoid risky situations, there’s nothing you can do that will either cause or prevent a miscarriage,” I always told my patients. I tried to believe it myself.

I had cared for enough children with cerebral palsy to know that a perfect chromosomal arrangement is no guarantee of an uncomplicated childhood. I had loved enough children with disabilities to know that a complicated life can be a very high-quality life.

I accepted my own powerlessness to prevent the death and disability of the fetus that I carried with me to the hospital everyday, even as I worked to prevent death and disability in my patients. I was terrified of parvovirus, of toxoplasmosis, of radiation. Above all I feared a cord accident. How ridiculous, I thought, that once my child was born I would do everything possible to keep him safe from dangerous cables, but while he was in my body I had no way to protect him from problems related to his own umbilical cord.

Something might go horribly wrong at any moment, I knew. But I thought that, whatever happened, the medical community would understand. I never imagined that I would start to get sick in a way that no one quite understood, because my son was also sick in a way that no one quite understood.

There are four separate but interrelated processes that happened to us. Two of them (intracranial teratoma and associated coagulopathy) took my son’s life, and two of them (maternal mirror syndrome/Ballantyne syndrome and a strange muscular hemorrhage) threatened my life. There have been no real medical studies about any those things, because they are too rare for meaningful study to have been conducted. There are only sporadic case reports – and a handful of case series. Usually these include the phrase “the etiology is not fully understood”.

We were, maybe, one-in-three-million. We confounded generalists and specialists (and me). I will always wonder if the right specialist, at the right time, may have come up with the right delivery plan and the perfect mixture of neoadjuvant chemotherapy to save my precious boy. But we fell several strokes of luck away from that outcome.

I read the textbooks. But they weren’t written for me, and they weren’t written about me. They did not apply to me.