Mom’s Facebook Community Helps Diagnose Her Ailing Son

Mothers with young children make up a large majority of active social media users, and while there’s much speculation as to why this is (a sense of a community and support, a network of recommendations and tips for products and childrearing), the bottom line is often condescendingly that mommies are simply hanging out on Twitter and Facebook. Whether tweeting about the best homemade Popcicle recipes or posting about which stroller to buy, their actions are often relegated to the corners “mommy blogs,” suggesting that their community and the information that they share is trivial. But Deborah Copaken Kogan snapped some pictures of her ill son while at the pediatrician which she in turn posted to Facebook. The response from her friends and family about the way her son appeared ultimately helped correctly diagnose him with the very rare and potentially fatal Kawasaki disease, even though doctors were certain that the boy was merely suffering from strep throat.

Kogan describes the scene in a piece for Slate, beginning with Mother’s Day:

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 next day, Kogan’s little boy was even more puffy and red prompting her to take another photo. Within three hours, she had more than 20 comments on her Facebook page that suggested allergic reactions or scarlet fever. Eventually, Kogan received a call from a former neighbor who saw the photos on Facebook and urged her to get the emergency room as soon as possible. She recognized the symptoms, as her own son appeared the same before being diagnosed with Kawasaki disease — an auto-immune disorder that attacks the coronary arteries surrounding the heart.

Kogan raised the possibility to her doctor who moved forward with the necessary tests, diagnosed him with Kawasaki disease, and began treatment. Kogan credits Facebook with not only bringing other alternatives to her attention, but also with providing her with much needed support from the very lonely corners of the children’s ward:

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.

Mothers have spoken in the parenting blogosphere before about how social media can break the isolation that so many women with children feel. Despite Kogan’s very unique circumstances regarding her son’s illness, her turn to social media in times of parental crisis is a trend that more and more modern parents are engaging in. Finally something positive about social media makes it into the mainstream press.

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