William’s Story

This is my sweet little William at age 2.5, in the hospital with Kawasaki disease.

What is Kawasaki disease? I’m so glad you asked. It’s when all the blood vessels in the body from the brain to your feet, for some unknown reason, inflame. It is most common in children under age 5. What is so particularly dangerous about this is that if left untreated, the inflamed blood vessels in the heart can lead to aneurysms and cause heart damage. This can lead to heart attacks and even death.

The hallmark symptom of Kawasaki disease is having a fever for five days or longer. As the paediatrician put it to me, “It’s not atypical for a child or adult to have a fever for 3 or 4 days but once you cross the 5-day threshold you’re looking at a whole different set of possibilities.”

We took William to the ER twice before he was diagnosed. The first time, on day 3 of fever, we were told he had a virus and sent home. Two days later, with his fever unabated, he laid on the couch listlessly and moaned. He would not let you touch him, probably because he was in pain from the inflamed blood vessels. I called the ER and spoke to the nurse. I relayed my son’s condition.

“Bring him in immediately”, she said.

Unbeknownst to us, William was displaying the textbook symptoms of Kawasaki disease. Fever for at least five days, an intense rash covering his torso, swollen lymph nodes-it looked like you had sliced a golf ball in half and stuck it on the side of his neck, red “strawberry” swollen tongue and blood shot eyes. The only symptom he didn’t have was red swollen hands and feet.

Fortunately for us, the doctor who saw him in the ER was a paediatric hematologist from Sick Kids who was working as a locum (covering for a doc at Grand River Hospital). He immediately started asking questions no one else had.

“Tell me about this rash (it had disappeared by then). Has he had this fever for 4 days or 5?” Within 5 minutes he was diagnosed.

William spent 4 days in the hospital. He received two intravenous doses of immunoglobulin, the blood product used to treat the vessel inflammation. Immediate echocardiogram showed no heart damage and the one at the 6 months follow up was negative as well.

It is easy to forget how lucky we are. William is a lively, healthy and rambunctious 12-year-old.  We can put this frightening episode behind us. Many families are not so lucky.  In my volunteer work with Kawasaki Disease Canada, I met and learned about many families whose young children have serious heart damage. They have had multiple open-heart surgeries and will spend their entire lives on heart medication. Tragically, some children, went undiagnosed, appeared to recover and later suffered fatal heart attacks.

Kawasaki Disease Canada is committed to raising awareness, offering support to families, and fundraising for research for better testing and earlier diagnosis of Kawasaki disease. You can visit them at  www.kdcanada.org.

Please pass this on, especially to anyone that has young children in their lives. You may just save a heart.

~ Carrie

***Opinions expressed are those of the person who submitted this story.