Kawasaki Disease Primer, With Photos
Last week, the NYT published a story about Dr. Jane Burns' quest to solve the mystery of Kawasaki Disease. They also published a how-to spot it, but without photos. This is your primer, with photos.
I’ve lost count of the number of friends who sent me last week’s New York Times article on Dr. Jane Burns’ research into the roots of Kawasaki Disease, a formerly rare but now increasingly common heart ailment that attacks the blood vessels around the hearts of children under the age of five and is the leading cause of heart failure in that age group. Why did multiple people send me this article? A) Because cases of Kawasaki Disease are on the rise, both in Japan, where it’s always been more prevalent, and now here in the U.S., where doctors have reported recent surges; and B) Because Leo, my youngest, came down with KD when he was four years old.
Back then, in May of 2011, I’d never heard of Kawasaki disease. His pediatricians, too, were baffled when tests for strep and scarlet fever came back negative. He was eventually diagnosed via a few photos I posted to Facebook, asking for help figuring out why my son looked so swollen. Three astute friends chimed in: Stephanie Szostak, my former neighbor, whose son also had KD; Dr. Emily Wessler, my first cousin and a pediatric cardiologist at Stanford, who sees what happens to children when they are not diagnosed within that critical five-day window after the onset of symptoms; and Dr. Beth Worley, a pediatrician who at the time was also, like Emily, working in California, where there are more frequent cases of KD than on the east coast. (Thank you to all of them! So much thank you forever and ever and ever!)
I wrote about this experience in Slate many years ago, and then the Today Show did a feature about that essay, which you can find here. But I was dismayed enough that the accompanying story in the New York Times, “How To Spot Kawasaki Disease in Your Child,” did not show photographic examples of what KD actually looks like on the face and body of a child—since these are critical pieces of the information puzzle—that I decided to chime in here yet again, especially after my daughter texted me this morning, asking for photos of her once KD-afflicted baby brother for a presentation she’ll be giving on Kawasaki Disease to her med school this Thursday (and to which I will link after she does.)
So in the interest of offering more information and images to those searching for them online, I’ll post them here and make this story free for all.
Many of my older readers, I realize, are way past the early parenting years, but some of you are either heading into or already well into your grandparent years, so it can’t hurt to have seen these images to store away in your brain for future reference, especially as cases continue to rise. Also, now that the environmental/wind hypothesis has been highlighted in Dr. Burns’ work—it had been brought up as a possible root of Leo’s Kawasaki disease back in 2011 as well—I should also note that Leo’s case of KD did happen to come right on the heels of trip we took to Berkeley, California for his spring break. So do with that information what you will.
And now, without further ado, some photos…
In the early days, he had a rash on his stomach.
Later, the skin on his hands started to peel, first from the top of the fingernails, then all the way down the palm. This is a classic sign of KD.
His eyes were bloodshot, and his lips and tongue were both ruby red.
His face was twice its normal size. It was swollen, in fact, beyond recognition. Here he is in the emergency room, in a hallway outside of triage. Because Kawasaki disease was so rare back then, and none of the nurses in the emergency room had heard of it, I had to fight for his right to get admitted. It took all day, and even then, we were often left in hallways after various tests, such as an eye test and an echocardiogram.
Here’s the chaos of that emergency room that day, where we sat for hours in a hallway.
Finally, he was put on IVIG, aka intravenous immunoglobulin, which was described to me as a murderously expensive, highly concentrated bag of white blood cells. Unfortunately, he relapsed after the first bag, was readmitted, and had to receive a second dose of IVIG. After which he turned yellow with liver disease.
After the second admission to the hospital, they kept him in longer to watch him. His sister came to visit him several times.
Anyway, today Leo is totally fine. He has not had any lasting heart issues or conditions. And he is heading off to college in the fall with a clean bill of health. But this is because we caught his Kawasaki disease early, on the third day, thanks to vigilant friends who noticed it, and I can’t stress this enough: time really is of the essence with this disease. So like they say on the NYC subway: if you see something, say something. It might just save a child’s life.
Well Deborah …. I was stunned to see your article on KD . My son Ari was diagnosed with it in 1982 at age 2 . We were so fortunate to have him seen by a young doctor fresh out of Mayo and who had been aware of this “ new “ virus when his older partners were puzzled. Thank goodness we had the means to have him monitored with echocardiograms till he was 5 and of course initially put on blood thinners . He was case # 751 when registered in Infectious Disease Center in Atlanta at that time . I will add I had offered at the time maybe my carpet cleaning prior to his diagnosis was perhaps connected to this disease since his older siblings where not🤔 I was blown off until around 7 years later my pediatrician send me an article from the academy of pediatrics making a partial connection perhaps to carpet cleaning ( who knows … mothers intuition and common sense ? . Thank you as always for building on this important information with your photos.
Thank you for sharing all of these photos and your experience. In these days of crowded ER’s, burnt out and overworked medical and nursing staff, it feels really important to have this information.