Join me on my journey through my nine-month-old son’s battle with Kawasaki disease. I share the intense emotional and physical challenges we faced, the misdiagnoses, and the eventual life-changing diagnosis that reshaped our lives.
Please see more information on Kawasaki Disease HERE
Have you ever experienced that daunting, unexplainable feeling when you sense something bad is about to happen? That was the sensation I had when an infectious diseases specialist and a cardiologist walked into the room that day. They sat down with faces etched in concern and asked us to take a seat. I was bouncing up and down while holding my son, seemingly to comfort him but actually trying to comfort myself.

They began discussing the damage to my son’s coronary arteries and how giant aneurysms had developed due to the delayed diagnosis of Kawasaki Disease. Their voices blurred into a heavy, dull sound in my ears; time seemed to slow down, and my heart sank. At that moment, I broke down and started crying hysterically. I couldn’t control myself; I was overwhelmed with despair.
The doctors tried to console me, urging me to sit down, but I couldn’t control anything. My body and mind were in turmoil; everything felt like a waking nightmare, a mother’s worst fear realised. Amidst the haze, I remember asking questions trying to make sense of this and the cardiologist started to draw a diagram to help us understand.

The Medical Explanation (Simplified)
Here’s what it means: Kawasaki Disease had caused inflammation in my son’s coronary arteries, resulting in multiple large bulges (aneurysms) throughout. As blood now flows through these arteries, it swirls around in these bulges—larger aneurysms mean more swirling. This swirling blood can clot, leading to blockages and potentially depriving the heart of blood supply. Furthermore, the size of the aneurysms posed a risk of the arteries narrowing again, potentially causing further blockages.
I asked the doctor what we could do and what this meant for my son. They explained that immediate aggressive treatment was necessary to halt the disease and prevent additional damage. This involved high doses of steroids and aspirin to suppress his immune system and reset it. Additionally, a Central line (central venous catheter) would be inserted through his arm and near his heart, facilitating the administration of these medications. Due to his age and the procedure’s nature, he would need to be under general anaesthesia, and we couldn’t be present during this time.

The cardiologist also emphasised the need to thin his blood with medication due to the risk of blood clots, requiring regular monitoring to ensure his blood was within the therapeutic range.
If you’re a parent reading this, you can likely understand the excruciating ache in my heart since facing this diagnosis (I shed many tears writing this). My baby was only 9 months old, and I wasn’t just informed of a dangerous heart condition; I was told he needed surgery and a lifetime of medications to prevent a heart attack.
There was no cure.
Your comments and feedback are invaluable to me. Whether you’ve experienced something similar or know someone who has, please feel free to share your thoughts below. Your support means the world to us as we navigate this challenging journey with Kawasaki Disease. Together, we can raise awareness and offer comfort to others facing similar struggles. Thank you for being a part of our story.