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Parents, Doctors, Trust, Tragedy: The Sad and Disturbing Case of Rory Staunton

Rory Staunton’s story is such a sad one that I feel I should apologize for calling your attention to it.  It’s exactly the kind of tragedy that scares me into a stupor:  An amazing, intelligent, exceptional 12 year old boy cut his arm playing basketball. Three days later, he was dead, after a septic strep infection went undiagnosed by both his pediatrician and the staff at the ER.

Sometimes, when bad things happen to children, we try to find reasons for them. Things we might have done differently. Things that distance us from the pain. But it doesn’t work for Rory.  This did not happen to parents who weren’t attentive or thoughtful or careful or concerned. It didn’t happen in a place where doctors don’t know what they’re doing.Rory’s parents sought medical help promptly. They took him to the pediatrician. They took him to the hospital, a well-respected one in Manhattan. They even challenged the doctors when they dismissed the child’s symptoms. The only thing they did not do was tell the doctors—professionals with years (decades?) of experience—that they were wrong. They were. Rory’s systemic infection was mistaken for a combination of benign concerns (a banged leg, a stomach virus) while the infection raged out of control.

I worry about a lot of things. But if I held a contest for supreme anxiety, missed diagnosis would be a very strong contender for the crown. It’s bad enough that we can’t control the ills that befall us. The idea that we could be both stricken and misunderstood is doubly terrifying.

Having been through some degree of personal medical rigamarole, I have learned a little bit about medical diagnosis and how it works. And it has pretty much scared the crap out of me.

Here’s how I thought it worked:

You go to the doctor with some symptoms.

The doctor thinks:

Could this be something really dangerous?

Let’s rule that out.

Then let’s look at all the other possibilities.

Instead, it seems more like:

You go to the doctor with some symptoms.

The doctor thinks:

What is this most likely to be?

This makes sense in a lot of ways. Statistically speaking, it was more likely, much more likely, that Rory Staunton’s leg pain would have been the result of a basketball injury, and his vomiting and fever the result of a stomach virus.   It is a doctor’s job to keep all the possibilities in perspective. I understand that there are good reasons to not jump to the scary thing. It would be mind-boggling to have to rule out every minute possibility at every turn. Raising these questions could cause panic where there is only a sliver of a chance there is reason for concern. And investigations have other consequences. Financial, yes, but also medical: radiation exposure, side effects of medication, surgical risks. In Rory’s case it seems like the choices made were less about weighing the cons of further investigation and more about just not considering the worst. In medical school, doctors are told to “look for horses, not zebras”: to think in terms of what’s common, not the sliver of a chance.

This adage is probably quite useful most of the time. But it failed for Rory.

We are taught to trust our doctors, to leave them to the secret language of the bodies that hold our lives and loves. But then the system fails, and parents are told instead to “trust their instincts”.  But what does this really mean?

A parent with a sick child always has one eye on the horizon, scanning for anything that might be a threat.  When I’m on high alert, I would be hard pressed to distinguish the instinct that something is wrong from the fear that it might be.

With the stakes so high— and with stories like Rory’s—how do you tell the difference?

via Lisa Belkin at the Huffington Post

(photo from video tribute to Rory, below)

 

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