When Carin’s two year-old son Isaiah came down with a fever, she didn’t worry at first. After all, he had just started preschool, and everyone knows preschools are petri dishes for viruses. There was no reason to suspect anything more. She treated his fever at home and kept a close eye on him. A few days later, the fever was still raging, so she took him to a walk-in-clinic, like any parent would. There, the doctor told her Isaiah had a virus, and he’d be better soon.
But he didn’t get better. In fact, the fever persisted, and the symptoms took a turn for the strange. He developed swollen lymph nodes, and an odd rash. He refused to walk. What was going on?
After a second visit to the walk in clinic (where she was offered more reassurance), and two visits to her pediatrician, the days were passing, and Isiah wasn’t getting any better. He was getting worse. But nobody could give her a diagnosis.
Finally, Carin took her son to Sick Kids ER. And there — at last — the proper diagnosis was made: a rare illness that most commonly affects kids under the age of five. Treatment was started.
Which sounds like a good thing. A relief, even. Trouble was…the diagnosis was made too late.
Because of this illness, Isaiah’s heart suffered irreparable damage. An echocardiogram (an image of the heart) performed six weeks later showed giant coronary artery aneurysms. At the age of four he had cardiac bypass surgery — a procedure that was, unfortunately, only partially successful. He now lives on daily medication and injections. Now, at the age of six, Isaiah is so familiar with going to the hospital he calls it “my hospital.”
So what was the mystery diagnosis? Kawasaki Disease.
Never heard of it? I’m not surprised. Not many people have.
But that needs to change. Because as tragic as it is, Isaiah’s story isn’t the worst one out there.
Elizabeth was at work in Toronto when her babysitter called to say her six year old son, Dylan, wasn’t feeling well at playgroup. You know this kind of call — we all get them from time to time. Just last week my five year old’s kindergarten teacher called me to say he wasn’t feeling well. She wanted to know if I could pick him up.
But in Elizabeth’s case, she never got the chance to pick up her son. She left work early, to offer relief to her husband—exhausted from working a night shift—who had gone to retrieve Dylan. When she stepped on the commuter train home to Kitchener she phoned her husband. “I called him in a jubilant mood, excited to tell him I was enroute home,” she says. “I couldn't understand him when he tried to talk, he was so distraught. He had to hand the phone to the police woman that was with him at the house. It was then I found out that Dylan wasn't breathing.”
Dylan had collapsed. His father had tried to do CPR and called 911. The paramedics were there working on Dylan.
The train sped Elizabeth home, but not fast enough. The moment the train arrived, Elizabeth called her husband. He was at the hospital, and he uttered the words no mother can imagine hearing.
Dylan had died.
“I will never forget that moment,” Elizabeth says. “The only other person on my train car was a very kind woman, probably a bit younger than me. I told her my son had died. She helped me off the train with my briefcase. Walking up to greet her was her husband with their little boy in his arms. I remember thinking how badly she must have felt.”
Elizabeth’s previously well, full-of-life six year old boy was gone forever.
As far as Elizabeth knew, Dylan had been a completely healthy boy. But an autopsy confirmed that at some point in the past, probably years prior, he’d had Kawasaki. The disease—unrecognized and untreated—had caused damage to his heart. There was evidence to show that Dylan had periodically experienced silent heart attacks over a long period of time until finally, at the age of six, his young heart simply gave out.
Elizabeth had never even heard of Kawasaki Disease, much less realized her son had had it at some point. That’s how subtle the original illness had been.
But out of this horrifying tragedy, a new purpose was born for Elizabeth. In 2014, she founded Kawasaki Disease Canada. She has made it her mission to promote awareness of this disease—because awareness can change everything.
As terrifying as these stories are, it’s important to know that a brush with Kawasaki is not a guaranteed disaster. Sometimes, the outcome is not a tragedy.
Jonathan is a friend of mine from high school. And in February 2013, his son Will, just a few days before his second birthday, got sick with a fever and a bit of a rash. Nothing alarming, but Jonathan took him to their family doctor the next day anyway. Of course, reassurance was offered but no specific treatment. A couple of days later—on a Saturday—the fever hadn’t let up so he brought Will back to the clinic, where they saw a young resident and another doctor who was covering for their own GP.
This time, something happened to change the trajectory of Will’s illness. The doctors they encountered had Kawasaki Disease on their radar. They suspected it, and although the signs were soft, they sent Will on to a pediatrician. After a couple of days in hospital and more testing to rule out other conditions, the pediatrician decided to treat for Kawasaki Disease “just in case,” because they were still within the critical 10 day window. Later tests demonstrated that it had been the right call. It had in fact been Kawasaki Disease—and the treatment had been successful.
Will was one of the lucky ones. Now, almost two years later, he’s completely healthy. Echocardiograms have demonstrated there is no sign of any heart damage.
As a medical student, I remember learning about Kawasaki Disease, and I remember feeling scared by it. A relatively newly identified disease—first observed in 1961 by a pediatrician in Tokyo, Dr. Tomisaku Kawasaki—there wasn’t much known about it, and there was no known cause. It was a disease that carried terrifying connotations for us newbie med students. The likelihood of encountering it was rare, but the risk of missing the diagnosis was huge.
And maybe, after reading these stories, you’re scared too.
I have good news: you’re not powerless. Awareness is the key. It’s critical, in fact. Read on, because I'm going to explain why.
Kawasaki Disease is an autoimmune disease currently estimated to affect 30 out of 100,000 children under the age of five. It causes inflammation of certain blood vessels in a child’s body. Although it’s an uncommon illness, it’s the leading cause of acquired heart disease in kids. It can cause damage to the coronary arteries in the heart, which leads to heart attacks and heart failure. Early treatment, however, significantly reduces the risk of developing heart disease.
As you know from these stories, Kawasaki Disease can be fatal if undiagnosed—but it doesn’t have to be. Early treatment significantly reduces the risk of heart damage. There’s a narrow window of treatment time: just ten days from the onset of fever. After that, the damage is done. Kawasaki Disease can easily be mistaken for other childhood illnesses and is often misdiagnosed. However, if a doctor considers the possibility and treats the child “just in case,” like in Will’s case, disaster can be averted.
So here’s the most important part: awareness of the warning signs.
Children exhibiting FEVER for 5 days or more with any two of these symptoms should be seen by a doctor immediately:
• body rash
• red eyes
• swollen hands or feet
• cracked dry lips
• bumpy red tongue
• swollen lymph node in neck
If your child—or your sister’s child, or the kid in your daughter’s ballet class, or your neighbour’s grandson—exhibits these symptoms, I don’t want you to hesitate to mention it. Of course, I don’t want to create mass panic or alarm, but in this case, early detection can save a life.
My friend Jonathan—Will’s father—knows how close they came to disaster. He also knows that many families aren’t so lucky, which is why he has joined the fight to raise awareness.
“Simply asking your doctor “could this be Kawasaki Disease?” brings it into conversation, and because diagnosis can be difficult it’s critical to consider the possibility early,” Jonathan says.
“Awareness of Kawasaki disease is so important because early detection is critical,” says Elizabeth, Dylan’s mother. “If a child is diagnosed with Kawasaki disease within 10 days of the onset of fever, the child’s chances of having lifelong coronary issues drops from 25% to less than 5%. Know the symptoms. If your child has had a fever for five days or more with two or more of the symptoms, ask your doctor if your child could have Kawasaki disease.”
Carin, whose son Isaiah is living today with serious heart disease, has been very open about her family’s experience with Kawasaki Disease. She knows that somewhere, somehow, another child will be helped by it. “I hope that sharing our story will save another family from needlessly having to climb those same mountains and face a future clouded by uncertainty and fear.”
The more awareness there is about this disease, the more likely Kawasaki Disease can be recognized at an early stage. Please talk to friends and family about it, share this article, and spread the word.
Together, we can save more little hearts.
January 26th is Kawasaki Disease Awareness Day. Go to kdcanada.org for more information... and please share this article.