How One Mom’s Pictures on Facebook Saved Her Son’s Life

LeoWhen Deborah Copaken Kogan snapped a photo of her 4-year-old son, Leo, in the pediatrician’s office on Mother’s Day and uploaded it to Facebook, she was looking for a few laughs (and probably some sympathy). The photo’s caption was, “Nothing says Happy Mother’s Day quite like a Sunday morning at the pediatrician’s.”

According to Slate.com, Kogan brought Leo to the doctor because he had a rash and a fever, and she feared strep. Leo was sent home with antibiotics, but the next day he was sicker and Kogan was back at the doctor. His new diagnosis was scarlet fever. Kogan continued posting pictures of Leo on Facebook to share with friends.

On the third day, Leo woke up so swollen and puffy that he was almost unrecognizable. Kogan sent pictures of her son to the doctor and posted one on Facebook. Before she heard from the doctor, Kogan got a call from Stephanie, a former neighbor and actress. Stephanie urged Kogan to bring Leo to the hospital; her own son had similar symptoms a few years earlier and was diagnosed with Kawasaki disease, a rare and sometimes fatal auto-immune disorder.

After receiving more comments and messages on Facebook from friends with the same suspicions, including a pediatrician and a pediatric cardiologist, Kogan brought Leo to the hospital. They were right: Leo had Kawasaki disease.

He will need tests on his heart every year for the rest of his life, but he is recovering and doing well.

Kogan, who originally joined Facebook to monitor the cyber-bullying of her oldest child, is grateful for how being part of a larger network of friends helped “diagnose” her son in a timely matter and also offered support during a difficult time. She recently wrote, “Thanks to my Facebook friends and their continuing support, I do not feel so alone.”

Do you have your own story about Kawasaki disease? Share your experience here.

Photograph by Deborah Copaken Kogan. Originally featured on Slate.

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  1. by Andria Arena

    On July 14, 2011 at 10:00 pm

    Fantastic story about how social media community helped save this young boy’s life. Who knows what would have happened to him otherwise. Love this story…and hope to read more about how social media communities play a vital role in the lives we live.

  2. by Heather

    On July 14, 2011 at 10:17 pm

    My daughter was diagnosed in October of 2010 with Kawasakis. She was fine one day. Second day she had a slight temp and a small fever blister formed on her top lip. Third day she was severely dehydrated, almost unresponsive and had green drainae coming out of her mouth. Her extremeties were purple and cold. She was admitted with viral symptoms. After 17 sticks they were finally able to get a jugular line. There are 5 doctors in her group and all the older ones swore i was a fever blister and a little swollen – it was the younger doctors who came up with the diagnosis. 5 days in the hospital, morphine every 2 hours and a whole lot of IV fluids, antibiotics, and antivirals she finally seemed like my baby again. She was 2 at the time and it was very hard not only on me and her dad but also on her twin. Please Please if you think your doctor is wrong tell them. I am a nurse and demanded somehing be done, because when they finally admitted her it was our 2nd dy going to the doctor. Stand your ground and demand answers. Good Luck.

  3. by jaynie cole

    On July 14, 2011 at 10:30 pm

    I’m constantly amazed at how well Facebook does with helping out in areas we parents never thought possible. In our small area many animals have been found, returned, and/or cared for due to someone posting on facebook and neighbors being on the lookout. we had a puppy get tangled up in our garage at 1am one night. By 6am we knew who she belonged to and they were on their way to our house to get her.
    My stepson had kawasakis disease it was only due to a young doctor on rotation in our small town hospital that he was sent to Portland and got the care he needed.

  4. by Michelle

    On July 14, 2011 at 10:47 pm

    Makes me wonder how many of these children springing up with these almost unheard of auto-immune diseases just had a round of vaccinations?

  5. by Elle

    On July 14, 2011 at 11:10 pm

    Glad to hear about Facebook having a good impact on this family!

  6. by Leigh

    On July 14, 2011 at 11:48 pm

    You never know who will have the answer to your question. It could be someone you wouldn’t have thought to ask.

  7. by Addie

    On July 15, 2011 at 1:06 am

    Our daughter came down with a text book case of KD when she was 3. We were taking her to the doctor everyday for a week and everyday a new symptom would arise. They told me that it was many different this even down to viral pink eye to explain her blood shot eyes. She had a very high temp, swollen tongue, a rash mostly on her trunk, her feet and her hands, she also had cracked and bleeding lips and the whites of her eyes had completely turned red. Finally after a week of not knowing what was going on with our little girl, we had an answer. We live in a small town and were sent to the city for treatment, she was given IVIG and high doses of aspirin over night and the next morning when she woke up she looked 100% better! We were able to go home the following day! We had to follow up with a Pediatric Cardiologist every two weeks. I am very happy to say she has a clean bill of health and no longer has to see the Cardiologist! It has been a almost 3 years since then and I still get chills when I think about it. The doctor did say that they didn’t know why it happens but they think it might be linked to either a virus or chemical exposure. A week before our daughter was sick, my husband was cleaning his rocks for his fish tank in the bathtub with bleach water. He thought I had our daughter and I thought he had her…come to find out she had opened the bathroom door and was playing in the bleach water…now I’m not saying I know for a fact that’s what made the KD come on but needless to say I run a TOXIC FREE home now :)

  8. by CM

    On July 15, 2011 at 6:24 am

    I don’t understand why this woman Went on facebook to get “sympathy” for her son while he was all swollen up instead of rushing him to the ER as soon as first real symptoms appeared! I’m glad the story turned out ok for the kid, but this woman needs to get her priorities straight!

  9. by SB

    On July 15, 2011 at 9:20 am

    CM, you don’t rush to the ER for everything! That’s what doctor’s offices are for. The ERs are clogged with people who don’t have emergencies.

  10. by Simone

    On July 15, 2011 at 11:03 am

    So I would love to hear why the first pediatrician didn’t find out what was wrong with the little boy. As a mother of 3 I don’t think I could go back to such a Doctor.

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