Our journey with Kawasaki disease is something I never thought we would have to experience. It all started with my son becoming unwell with a persistent fever. He developed a rash, became swollen and had extremely puffy eyes, red lips and was incredibly unwell. He was also experiencing tachycardia, with his heart rate remaining dangerously high for five days. One of the most frightening parts for me as his mum was seeing how different he was becoming. He was so unresponsive and not himself, and I knew deep down that something wasn’t right. For five days, we watched him become increasingly sick while trying to get answers and understand what was happening to our baby.
We initially went to hospital seeking help, only to be turned away and told that he had a viral infection. As a parent, being told that your child is okay when every instinct in you is saying otherwise is incredibly difficult. We went home, but the following day he was even worse. His heart rate continued to stay extremely high, and he was becoming more and more unwell. We knew we couldn’t ignore it and continued seeking medical attention. Three days later, we finally received confirmation that our little boy had Kawasaki disease. By that point, he had been unwell for days and had experienced five days of tachycardia. Hearing those words was terrifying. I had never really heard of Kawasaki disease before, let alone understood what it could mean for my baby or the potential complications it could cause.
What followed was one of the most terrifying experiences of my life. We were told to prepare for the worst. Hearing those words about your baby is something I don’t think any parent could ever truly be prepared for. In that moment, the fear was overwhelming. All I could think about was my little boy and how desperately I wanted him to be okay. I remember feeling completely helpless, but at the same time knowing I had to stay strong for him and be there every second I could.
Once he was diagnosed, everything happened so quickly. He required hospital treatment and had to go through IVIG, steroids, aspirin and antibiotics. He also had multiple cardiology scans because Kawasaki disease can affect the heart, and monitoring his heart became a huge part of his treatment and recovery. Seeing his heart rate remain so high for five days and knowing that his heart needed to be closely monitored was one of the most terrifying parts of the entire experience. Watching your baby go through medications, procedures, constant monitoring and hospital stays is something no parent should have to experience. There were moments where I was absolutely terrified of what the next few hours might bring, but I stayed by his side, held him whenever I could and hoped that every treatment would bring us one step closer to getting our happy, healthy little boy back.
Even though we are now past the most acute part of his illness, our journey with Kawasaki disease hasn’t simply ended. He now needs to take aspirin every single day and has regular follow-ups with his cardiologist. He will continue to have his heart monitored through ongoing cardiology appointments and scans. As a mum, it is difficult not to worry about what the future might hold, especially after being told to prepare for the worst and seeing just how quickly his condition changed. Every appointment can bring a mixture of hope and anxiety, because while we want to believe everything is okay, there is always that little voice wondering what the next scan will show.
This experience has completely changed the way I look at childhood illness. Before my son became sick, I knew very little about Kawasaki disease. I didn’t know what the symptoms looked like, I didn’t know that it could initially look like a viral infection, and I didn’t know how important early diagnosis and treatment could be. I certainly never imagined that I would become a mum who knew the names of medications like IVIG, steroids and aspirin because they were being used to treat my own baby.
One of the biggest things I’ve taken away from this experience is the importance of trusting your instincts as a parent. You know your child. You know their normal behaviour, their personality and when something isn’t right. My son was not himself, and even when we were told it was a virus, I couldn’t shake the feeling that something more was happening. I’m so grateful that we continued to advocate for him and kept seeking help when he became worse.
I’m sharing our story because Kawasaki disease deserves so much more awareness. If I had known more about it beforehand, perhaps I would have recognised the signs sooner. If another parent reads our story and recognises a persistent fever, rash, red eyes or lips, swelling, extreme irritability, changes in responsiveness, a persistently elevated heart rate or their child simply not being themselves, I hope it encourages them to seek medical advice and keep advocating for their child.
My little boy has been through more than any baby should ever have to, and I couldn’t be prouder of how strong he has been. ???? There were moments when we were genuinely scared we might lose him, moments when we were told to prepare for the worst, and moments when I didn’t know how I was going to get through another day. But he fought. He kept fighting, and so did we.
Our Kawasaki journey isn’t over yet. We are taking it one day, one aspirin, one appointment and one cardiology scan at a time. I will never forget the fear of those days, but I will also never forget how strong my little boy was.
If you are reading this because your child has Kawasaki disease, please know that you aren’t alone. There are other parents who understand the fear, the hospital stays, the endless questions and the worry that comes with waiting for those cardiology results. And if you’re reading this simply to learn more about Kawasaki disease, thank you for taking the time to listen to our story.
Please learn the signs. Please trust your instincts. Please advocate for your child. Because sometimes, what looks like a simple virus can be something much more serious