Kawasaki disease continues to ravage the hearts of Canadian children; takes lives
February 27, 2018 — Kitchener, ON
Last year at this time, Jasmine and her family were celebrating William’s first birthday. This year, they are preparing for the heart-wrenching first anniversary of his death.
The third child of Jasmine and Chris Nadon, William was a happy, healthy boy, born on February 27, 2016 in Fredericton, NB. A week before William’s first birthday, he woke up cranky and with a slight fever. When vomiting started the next day and the fever was still there despite medication, William was taken to their doctor who prescribed antibiotics for an ear infection. A few days later, the family took him to the Emergency Room (ER) concerned that the antibiotics were not working. William still had a low-grade fever and he was lethargic. The vomiting had stopped, but he had developed a tiny rash on his elbows, cracked lips, and no appetite for solid food. This time, he was diagnosed with influenza and Norwalk virus and was sent home with instructions to alternate Tylenol and Advil for his fever. By the end of that second week, William seemed to be improving. His symptoms were gone and his fever seemed to finally fade away. A few days later, William started vomiting again and it didn’t take long before his fever was back, this time it was higher than ever. William was taken back to the ER where he had a chest x-ray. The doctor seemed concerned, as there was a small amount of fluid in his left lung and he suspected pneumonia.
Jasmine recalls, “I was sent to another hospital where there was a pediatrician who could see William. I grabbed a bag with a few items, since I thought for sure we would be spending the night at the hospital. When we arrived, I went over every symptom with the pediatrician and made it known that he was the only one in the house who was sick and something was not right. He was diagnosed with another virus and we were told to go home. At that point, I broke down and cried. I asked the doctor to please confirm William had a virus by swabbing him, do ANYTHING. No more testing was done and I had to take him home. The pediatrician called the next day to confirm that William had pneumonia (based on his x-ray) and had sent out a prescription for antibiotics that we were to go pick up for him.
“A few days later, William was gone. It was a Saturday afternoon we will never forget for the rest of our lives. William had fallen asleep in the living room and had woken up crying and sweating. I took off his shirt and tried to calm him and comfort him. When he wouldn’t calm down, I called for my husband and he took him. We noticed his lips were white and his cries, which had started out loud, were becoming softer and softer. I panicked and threw my boots on to take him to the ER but then he went unconscious, he had no pulse. My husband performed CPR on William while I struggled to dial 911…”
Months later William’s family found out through William’s autopsy that he had died of heart failure caused by coronary artery thrombosis due to Kawasaki disease.
Stories like this continue to be told across Canada. Fortunately, not all have such a devastating ending. Kawasaki Disease Canada, a national charity formed in 2015, has gathered and shared the stories of many children to help fulfill their mission of awareness and education.
“Whether the child lives in Fredericton, NB or Laval, QC, Burlington, ON or Beasejour, MB, there tends to be a common thread throughout the story. The child is usually diagnosed with one or more other conditions before Kawasaki disease is suspected. In many cases, the disease is caught ‘in time’ (treatment received by day 10 of onset of fever is very effective in reducing chances of lifelong heart disease)”, says Elizabeth Heald, Board Chair & co-founder, Kawasaki Disease Canada.
Christina Rizakos of Laval, QC, shares her story about her daughter, Victoria, who was not quite four years old at the time of diagnosis. “Victoria, who is our only daughter and also a twin, wasn’t feeling like herself. She wasn’t eating, she was very tired, she didn’t want to play with her toys, and she had a fever. I gave her some Tylenol and kept an eye on her. Her symptoms weren’t going away so we brought her to the clinic 3 days after the first day of fever. Her eyes at that point were red.
“The doctor on call examined her and told me it was a strep throat infection, as well as an eye infection. A quick strep swab came up positive and her eyes at that point were very red. She told me that this was due to an eye infection but I noticed there was no leaking or discharge coming out of her eyes. On Thanksgiving Day, we started with the antibiotics and the eyedrops.
“A day later, she wasn’t getting any better. She actually seemed to be getting worse…still had a fever, her lips were really red, and her eyes were still red, as well. I was worried and brought her back to the clinic. Thank God there was another doctor on call that had experience with Kawasaki disease! After examining Victoria and checking in with another doctor, he suspected Kawasaki disease and told us we needed to go to the hospital ASAP!”
Right around that same time, in another province, 4-year old Connor had a fever (38.3° – 40.1°C) for 3 days with a rash. Similarly, Tylenol and Advil did not bring the fever down.
Connor’s mom, Wanda Mueller Zieske in Beausejour, MB, took Connor to the ER. “The doctor said it was a viral infection and it would pass within 7-10 days. The doctor took a swab of his throat as well, thinking it could be strep throat. Three days later we received a call confirming he in fact did have strep. Connor started taking antibiotics. He still had a fever and I thought, great this should help! I hated to see him so lethargic and weak for so long.
“Connor took five doses of his antibiotic but was still not getting better. At this point, I was really concerned. This had been going on for 7 days and Connor now had a rash all over his body. His eyes, lips, and tongue were red, and his hands and feet were swollen and red. He was still sleeping all day with no energy.
“That evening I took him to the Children’s hospital. I have three kids and most of them had broken out with a rash after a virus but this one was like no rash I’d ever seen.”
Months earlier, in June 2017, Tina Dureau of Burlington, ON was taking her 3-year old daughter Brooklyn to the doctor. The doctor suspected scarlet fever because of the way Brooklyn’s rash presented and how Brooklyn acted. Results came up negative for scarlet fever so the doctor thought it was likely a virus and sent them home with instructions that “if it gets worse, come back in a bit.”
Tina says, “The rash did start to go away and the fever did break for a couple days but she was still not herself. I ended up taking her back to the walk-in clinic. They said it was probably a virus.”
Later that week, Brooklyn was still not feeling well and the rash returned. Then, Brooklyn’s knees, ankles and wrists became swollen. That’s when they decided to take her to the closest Children’s hospital.
“I took her out of her car seat and she lost consciousness. She turned grey and just went limp in my arms. A doctor happened to be walking to his car at that point and saw her go down. He said, ‘You run ahead to the ER and get help and I’ll bring her in.’ She regained consciousness and the ER doctors said, ‘We can’t tell you what’s wrong with her but you’re not leaving until we find out.”
Fortunately, they suspected either juvenile rheumatoid arthritis or Kawasaki disease and ordered an echocardiogram. The pediatric cardiologist was concerned because, if it was Kawasaki disease, it was over the critical 10 day window.
It indeed was Kawasaki disease, but the IVIG (Intravenous Immunoglobulin) treatment worked and Brooklyn’s latest echocardiogram revealed that the artery is no longer dilated and she now no longer takes blood thinning medication.
“She has no restrictions. They said to make sure she leads a healthy lifestyle because the artery has been stretched. She’s back to normal now!”
Tina and her family now donate blood. “The IVIG therapy took 1,000 blood donations to make that one transfusion. That to me, blew my mind. I thought, ‘Wow, if all of these people hadn’t donated, her aneurysm would have grown and she could have died. Because of all the selflessness of people donating blood, she was able to get the transfusion she needed to save her heart.”
Meanwhile, Jasmine and her family continue to try to make sense of William’s death. “I’ve spent a lot of time reading about Kawasaki disease and I can’t believe I had never heard of it before. I believe that William’s case was ‘atypical’, meaning he did not have many of the typical symptoms. I hope that in my lifetime we will find out what causes or triggers Kawasaki disease or why it’s so damaging to some children but not to others and I hope that there will be better ways to test for and diagnose it in the future. My family and I are forever changed. We lost a son, my children lost a brother. We feel like we are living a whole different life than the life we had before this terrible disease took our son.”
Kawasaki disease (KD) is the leading cause of acquired heart disease in Canadian children. While some of the approximately 500 children diagnosed annually in Canada will have no lingering effects, some will develop lifelong heart problems. Typical Kawasaki disease presents as a prolonged fever lasting five days or more (four days or more in infants) with at least four other symptoms, including:
- a rash
- bloodshot eyes
- bright red, swollen, cracked lips
- “strawberry tongue”
- swollen hands and feet
- redness of the palms and soles of the feet
- swollen lymph node in the neck (usually just on one side)
However, Kawasaki Disease Canada encourages parents to ask their doctor about Kawasaki disease when a prolonged fever is accompanied by any two of the above symptoms.
About Kawasaki Disease Canada
Kawasaki Disease Canada is a national registered charity with a mission to promote awareness and education about Kawasaki disease, support individuals and family members affected by the disease, and advance research into the disease and its consequences. For more information, visit kdcanada.org.
For more information contact:
Board Chair, Kawasaki Disease Canada