Facebook saved my son's life: My social network helped diagnose my son's rare disease.

Facebook saved my son's life: My social network helped diagnose my son's rare disease.

Facebook saved my son's life: My social network helped diagnose my son's rare disease.

What women really think about news, politics, and culture.
July 13 2011 10:19 AM

How Facebook Saved My Son's Life

My social network helped diagnose a rare disease that our doctors initially missed.

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Then the Sunday pediatrician's office called. Leo's strep test was negative.

Now I was perplexed and slightly worried. If it wasn't scarlet fever, what was it?

Leo. Click image to expand.
The photo of Leo that triggered discussion of Kawasaki disease

Meanwhile, the most recent photo I'd posted to Facebook now had 36 comments underneath it, with various diagnoses and words of support, and my Facebook inbox was bulging with private messages, one of which was from Beth, a pediatrician, echoing Stephanie's fears.

My cousin Emily, a pediatric cardiologist who often has to deal with the fallout from untreated Kawasaki, also called after seeing the photo, urging me to go to the hospital. "The damage begins as early as five days after the onset of symptoms," she said. At this point, we were well into day three or perhaps even day four, depending on when the symptoms had begun. I wasn't sure. I'd spent all day Saturday working on my book, and my husband doesn't notice rashes and fevers.

I called my family doctor and told him I was heading to the hospital. "I just have a Spidey sense," I said, "that he's really sick." Not a lie, but not the whole truth, either, though what was I going to say? Three of my Facebook friends think my kid has an extremely rare childhood auto-immune disorder which I just read about on Wikipedia, and since they all contacted me after I posted a photo of him on my wall, I'm going? It seemed … wrong! Reactionary. And yet as much as I wanted to be my usual mellow self, the immediacy of the Facebook feedback was enough to push me out the door.

From the hallway in triage, I finally called our family doctor. Admitted what I'd done—furtively filling in the reason-for-visit blank on the hospital form with "possible Kawasaki disease"—and why I'd done it. "You know what?" he said, "I was actually just thinking it could be Kawasaki disease. Makes total sense. Bravo, Facebook."

Leo at the coctors. Click image to expand.
Leo on day 2 of his fever, prior to diagnosis

Over the next three weeks, as Leo was treated, released, retreated, and rereleased for, yes, first Kawasaki disease and then the Kawasaki-triggered liver disease from which he's still recovering, Facebook transformed from my son's inadvertent lifesaver to the most valuable tool in my arsenal: to keep family and friends abreast of his ever-mutating condition without having to steal time and emotional energy away from him; to pepper both Beth, the pediatrician, and Emily, the pediatric cardiologist, with an endless series of random questions with which I was too embarrassed to bother my own doctors; to feel connected—profoundly connected—to the human race while living, breathing, eating and sleeping in the isolating, fluorescent-lit bubble of a children's hospital ward, where any potential humans I might have "friended" on our floor were too distraught over the fates of their own children to make any room in their hearts for strangers.

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The day I posted a video of Leo blowing out the candles on his birthday cake, one woman commented, "We were all holding our breath for those candles," as if she, too, had come to know the virtual crowd that had gathered on my wall—the collective we—and was speaking on behalf of all of them. And when I finally posted that the revisions on my then overdue novel were done—my editor, a new Facebook friend, was understanding, given the chaotic state of said wall—the collective we went wild. "Woo hoo!" they wrote. "Way to go …"

Leo's liver, two months later, is slowly recovering, and for now his enlarged heart is doing well, though he will have to endure echocardiograms every year for the rest of his life, and I will have to endure knowing, slightly more than most, that, in the middle of kindergarten, or on a soccer field, or as he's marching down an aisle to the accompaniment of "Pomp and Circumstance," or while holding the hand of his future spouse, my son could suddenly drop dead of a heart attack.

Such knowledge, to say the least, is isolating. But thanks to my Facebook friends and their continuing support, I do not feel so alone.

Deborah Copaken Kogan, a columnist for the FT, is adapting her bestselling memoir, Shutterbabe, as a miniseries for Sundance TV. Her next novel, The Red Book, will be published this spring.