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.

Leo and author. Click to expand.
Self-portrait of the author and her son, Leo, on a stretcher in triage

Mother's Day morning, my 4-year-old woke up with a rash. It was my 16th Mother's Day. I was inclined to ignore rashes. But a note had just come home from day care reporting a case of strep in Leo's classroom, so I dutifully felt his forehead, noted it was hot, and made an appointment at a medical office with Sunday hours. While waiting for the results of the strep test, feeling bored and somewhat sorry for myself, I snapped a photo of my son on the exam table playfully covering his face with his blankie, which I then posted to Facebook with the following caption: "Nothing says Happy Mother's Day quite like a Sunday morning at the pediatrician's."

The rapid strep test came back negative, but none of my three kids' in-office strep tests have ever come back positive, even when they have strep. Plus Leo's fever was on the rise. "He looks really streppy," said the doctor on call. "I think we should treat him for strep, and if his throat culture comes back negative, you can reassess with your family doctor."

"Great," I said, happy to have the prescription for Amoxicillin in hand. I was on a tight deadline to hand in revisions on my new novel. The fewer days of daycare Leo missed, the better. I logged onto Facebook and saw that many of my friends and "friends" had already commented under the new photo, wanting to know what was wrong. Three years earlier, when I reluctantly joined Facebook in an effort to monitor the online bullying of my eldest, it was inconceivable to me that complete strangers would ever fret over my child's welfare, never mind that the act of posting itself has become as integral to my daily existence as talking, writing, thinking, dreaming.

"Strep," I tapped with my thumbs on my iPhone. "No biggie." No use going into the whole, Well, it could be strep, but we're not sure; like answering a tossed off "How are you?" with a litany of minor complaints. Besides, what else could it be? Nothing this veteran mother had ever seen. I filled the prescription at the nearest pharmacy and fed Leo his first dose. The sooner he took it, I knew, the sooner he'd be better.

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Leo in triage, hooked up to an EKG

Except the next morning he was worse. "Bring him in," said our family doctor. Scarlet fever —a fancy name for strep with a rash—was his tentative diagnosis as well, pending the results of the throat culture, due back the following morning. I snapped another photo of my now puffy, less playful child on the exam table and posted it to Facebook with the following less cheeky caption: "Baby getting sicker. Eyes swollen shut. Fever rising. Penicillin not working. Might be scarlet fever. Or roseola. Or...???? Sigh."

Within three hours, 20 comments appeared underneath the photo, ranging from, "Allergic reaction?" to, "Scarlet fever isn't nearly as scary as it sounds," to, "Deb, that doesn't even look like Leo in the picture!! how's he doing now? so scary!"

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Scary?, I thought. That's going a little over the top. Until the next morning, when my son's face was now swollen beyond recognition. "He looks like Eddie Murphy in The Nutty Professor," I said to my husband Paul, trying to keep it light—my normal modus operandi—though inside a definite heaviness was taking root.

"He's fine," said Paul, whose lack of alarmism can be both useful (say, in choppy waters, clinging to the Sunfish we'd capsized) and dangerous. When our 16-year-old, as a baby, produced a diaper full of blood, Paul, not yet processing the fact that his infant could be dead from intussusception within hours if left untreated, scolded me for calling the doctor at 10 p.m. on a week night. Afterward, he felt bad about it, but, still—when it comes to family emergencies, I've always been on my own.

While Paul, in his normal state of denial, dressed for work, I snapped a dozen iPhone photos of Leo from various angles to send to our family doctor via MMS, the least frightening of which I posted on Facebook so as not to alarm my (Facebook friend) mother. "Swelling worse," I typed, "especially eyes and chin. Fever still crazy high. Poor baby." Was I consciously trying to find an answer out there in the hive mind? No, but some subconscious part of me must have been wondering whether one of my hundreds of "friends" might be privy to some expertise on the befuddling Nutty Professor syndrome that had my child in its grips.

Ten minutes later, I received a call on my cell phone from Stephanie, a film actress and former neighbor. "I hope you'll excuse me for butting in," she said, "But you have to get to the hospital. Now." Her son Max had had the exact same symptoms, and was hospitalized for Kawasaki disease, a rare and sometimes fatal auto-immune disorder that attacks the coronary arteries surrounding the heart. "The longer you wait," she said, "the worse the damage."

I remembered Stephanie's son being rushed to the hospital a few years earlier, but I wondered whether she might be overreacting based on her own trauma. Then again, I thought, despite her profession, she's also not the type to overdramatize. I looked up Kawasaki disease online. Many of my son's symptoms seemed to match the descriptions therein, and yet they were also some of the same symptoms as the flu and scarlet fever. Did I really want to rush a kid with the flu to the hospital? The rational part of my brain said stay put, watch him for one more day at home, throw him in front of a video, sit down at your desk and do your work.

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.

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