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
Introduction
Having a child is one of the most transformative journeys you will ever experience as a woman. The internal shift that occurs is profound and difficult to put into words. We become deeply intertwined with our baby, driven by an overwhelming desire to protect, love, and nurture them, even when we feel we have nothing left to give.
Watching your child suffer or show signs of distress can trigger intense feelings of fear and panic. It is your instinct to help and comfort them. When this is beyond your control, you can quickly become consumed with guilt and despair. The inability to protect your child can make you feel like you’re failing.
Initial Symptoms
My son was just 9 months old when he was diagnosed with Kawasaki disease, and I still feel like I’m living in a nightmare because of it. At such a tender age, I was only prepared for common colds, mild infections, and anything in between. My mind never prepared me for the challenging road ahead, and I don’t know if it ever will. A few weeks before my son was officially diagnosed, we spent days and nights battling a very unwell baby. From high temperatures, angry rashes, bloodshot eyes, and non-stop vomiting, my baby was fighting something I couldn’t relieve him from, no matter how hard I tried. We made multiple visits to A&E, hoping the doctors would provide insight into what was making our baby so ill. We were in a vicious cycle of administering paracetamol and ibuprofen just to keep his 9-day temperature at bay, waiting for something to change.
Seeking Answers
Although we had many second opinions, we were met with different diagnoses that never led us to the right place: stomach bugs, eczema, common viruses, and more. Unfortunately, there is no test that can identify Kawasaki. It is about eliminating other causes first and deciding based on the presenting symptoms. My son was not presenting all symptoms at the same time, which is expected when so young. As a parent, you may not be a qualified doctor, but you know very well when something is not right with your child. So, we continued to return because every time we went home, he only worsened. My heart breaks when I think back to the pain my son endured over this period.
On the 9th and final day of returning to the hospital, my son was exhausted and still presenting with a high fever. They finally decided to admit him to Evelina’s Children’s Hospital, where our lives changed forever.
Hospital Admission
I spent the night with him as only one parent was allowed past 10 pm, plus we needed things to be collected to get us through the stay. That night, I slept in my son’s cot with him because I only wanted to be close. I needed him just as much as he needed me, and I didn’t want him to feel scared or confused. I was woken up a few hours later by a nurse who said his temperature had spiked once again, and she needed to give him medicine while we waited for the on-call infectious diseases doctors to visit.
When they later arrived, they were polite and pleasant, giving me nothing but reassurance that my son unlikely had Kawasaki Disease and would be fine. They spent around 20 minutes trying to put a cannula into his hand, causing him to cry in distress. I could only hold him close and tell him it would be okay while quietly crying to myself. The thing was, I knew nothing except that he needed me more than he had ever needed me in his 9 months of living. They were successful at some point and used the cannula to take blood (multiple times) and continue administering the antibiotics he was put on before being admitted.
The Diagnosis
The next day, we were visited by the doctors doing their rounds. Again, there were a bunch of trainee doctors in the room watching as the main doctor assessed my son with confidence, saying that he was completely fine and wouldn’t be here for long. It gave me hope. How can a qualified doctor be wrong, right? The doctors were great, and I’m not undermining their knowledge, but due to my son not appearing as a normal Kawasaki patient, they continued to assume. We were finally visited by the infectious diseases team. They came in later that day with a different approach. They listened, asked questions, and seemed deeply concerned about my son’s symptoms. Once they noticed the peeling on his toes and had reviewed all the other information, they decided it was best to treat him for Kawasaki Disease with Intravenous Immunoglobulin (IVIG). I was scared and full of sadness, not knowing what this actually meant and how serious this all was.
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.