To Whom It May Concern

To Whom It May Concern,

Hello old high school acquaintance on Facebook, who usually scrolls past me on their newsfeed.   Greetings to the mom from school who knows my son has a medical condition, but is too afraid to ask me about it.  Dear second cousin Judith, whose mom told her that my son was really sick, “but thank God he’s okay now.”  To my neighbour up the street, to the kindergarten teacher at the school, to the mom sitting beside me at the doctor’s office and to the dad sitting beside me at swimming lessons.

This letter is written to anyone that has a child in their life that they care about.  

You may have heard of something called Kawasaki disease…but probably not.  Contrary to the name, it has nothing to do with motorcycles.  In short, Kawasaki disease (KD) is the leading cause of acquired heart disease in children in developed countries.  You may be thinking, “Acquired heart disease in children?  What does that even mean?  I thought kids with heart problems are born with it?”  Not all cases of pediatric heart disease are congenital, or present at birth.  Kawasaki disease causes heart disease in children by forming aneurysms (bulges) in the arteries that supply blood to the heart.  These aneurysms put kids at risk of developing a blood clot that could cause a heart attack.  Children who were born with a healthy heart now have acquired heart disease.

The current annual incidence rate of Kawasaki disease in Canada is approximately 29.3 cases per 100,000 children under the age of 5 years old.   You may now be thinking, “Well, that’s pretty rare.  What are the chances that it will happen to my child?”  Yes, it may seem pretty rare and there is a good chance that your child will never have Kawasaki disease, but the reality is that the chance of your child (or a child you care about) having KD still exists.  The probability is not zero.  And I should know.  My son was one of those 29 in 100,000 children.

I know firsthand how Kawasaki disease can change a child’s life.  Isaiah was born with a healthy heart.  He was living the life of a normal two-year-old until he was diagnosed with Kawasaki disease right before his third birthday.  He developed multiple giant aneurysms as a result and it completely changed his life.  He now takes six medications daily (one is administered twice daily by injection), has endured countless medical procedures and tests and at four years old underwent a ten-hour long open heart double bypass surgery.  He is still at risk of having a heart attack and takes blood thinners every day (which poses other risks) to ensure that he does not develop a clot.

But Isaiah’s story is not the only one.  I know families that have endured far worse.  

Last June, my heart sank when I saw a post from one of my dear “KD mom friends.” It was every KD parent’s nightmare.  Her four-year-old had suffered a sudden heart attack and had been rushed to the hospital.  The damage that had been done to little Carson’s heart was so extensive that he had to be listed for a heart transplant.   I was heartbroken.   Although I have never met Carson, he and his family are part of my "KD family" and I feel a very special connection to all of them. Carson was placed on ECMO and then a Berlin heart.  Thankfully, Carson received the gift of life, a donated heart, a few months later.  The months leading up to his transplant were unbelievably difficult for Carson’s family. There were many moments they feared that their angel would be taken away from them.  I am so grateful that was not the outcome for sweet Carson.  

Carson at his recent transplant clinic visit. 
(You can read more about Carson’s story by joining his Facebook group: https://www.facebook.com/groups/187251738472699/)

Tragically, for another friend of mine, the outcome was very different.  Elizabeth lost her son Dylan as the result of an undiagnosed case of Kawasaki disease.   At six years old, Dylan suffered a fatal heart attack, which was caused by a blockage in his coronary arteries.  Elizabeth had never heard of KD until she received the autopsy report after Dylan’s death.  I did not have the pleasure of knowing Dylan, but my heart aches for Elizabeth and her family whenever I see photos of Dylan’s vibrant smile or read Elizabeth’s touching posts at each passing birthday, pondering what Dylan’s life would be like if he were still here with them.

I am not telling you these stories to scare you…or maybe I am. 

Most cases of KD do not have these endings, but they can.  I am sharing these stories, because I want you to understand why it is so important to learn the symptoms of KD and be aware of them.  Your child may not be that one in 29 out of a 100,000, but what if they are?  Wouldn’t you want to know that you did everything you could to increase their chances of a better outcome and a happy ending for your family?  In this case, “everything you could” can be as simple as learning the symptoms and raising the possibility of KD with your child’s doctor.

Here’s what you need to know.

Common symptoms of Kawasaki disease include:

• Fever (usually for five days or more)

PLUS

• Body rash
• Swollen lymph nodes (those are located in the neck and may appear as bumps/lumps)
• Red eyes
• Redness on palms of hands or soles of the feet
• Swollen hands or feet
• Dry, cracked lips
• Red, bumpy tongue (often referred to as “strawberry tongue”)

It is important to note that not all symptoms may be present and they may not all occur at the same time.  Infants under the age of 6 months, may only have prolonged fever and irritability as symptoms.  And to be clear, children over the age of 5 can also have Kawasaki disease.

If your child has a prolonged fever with two or more of these symptoms, ask your doctor if it could be Kawasaki disease.   Early detection is critical, as timely treatment will significantly reduce the chances of permanent heart damage (from 25% to less than 5%).

(Visit kdcanada.org to learn more.)

Some doctors may wave off the idea of KD, because “it is too rare,” or “your child doesn’t have all the symptoms,” or my favourite, “but your child isn’t Asian.” (There is a higher incidence rate in children of Asian descent, but if affects children of all ethnicities.)   He/she may be right, but at least you will have gotten him/her thinking about it and if the fever persists or more symptoms appear, bring it up again.  While most doctors do learn about Kawasaki disease in med school, I am sure many could use a bit of reminding.  Some doctors may have never actually seen a case of KD and others may only recall the “textbook scenarios” and not consider cases where fewer than four of the symptoms are present.  It can’t hurt to bring it into the conversation – you are the best advocate for your loved one.  

Had I known about Kawasaki disease before Isaiah's diagnosis, could I have saved his little heart from being ravaged by this disease?  I will never know.  But I am glad I had the opportunity to save you from having to ask yourself that same question.

Thank you for taking the time to read this.  While I hope you never have to actually use this information, I am glad that you now have knowledge that could help save a child’s heart.  But don’t just stop there, go educate your second cousin Judith, your neighbour up the street and your mom friend from your child's school.  I am sure they all have children in their lives that they care about.

Yours truly,
Carin
Mom of a Kawasaki Disease Warrior

P.S.  Huge thanks to Gina (Carson's mom) and Elizabeth (Dylan's mom) for allowing me to share their stories and post photos of their beautiful sons. xo