I am Mum to Reuben and his younger brother Jethro. Reuben was diagnosed at the age of 2 years, 4 months with A-Typical Kawasaki Disease in September 2021. He was resistant to treatment, requiring 2 rounds of IVIG and after discharge was readmitted for IV steroids. Reuben had coronary complications as a result and has coronary artery aneurysm and dilatation.
Reuben’s KD and subsequent heart complications changed our life forever. It inspired my passion for advocacy for parents and children, to raise more awareness for KD and families, and to help our community where I can, which is why I joined the Foundation as a committee member. I am currently studying to become a Registered Nurse and continue raising awareness about KD.
Our son Reuben is an energetic, active little boy and first became unwell on Fathers Day 2021. His first symptoms were vomiting excessively, lethargy, fever, irritability and a rash which started in his groin. He was seen by doctors that night who diagnosed gastro. The following day however the rash was spreading and his fevers were spiking – we again took him back to the doctors who diagnosed HV6 virus. A few hours later his lips were going blue and we didn’t have a good feeling so we attended the Emergency Department – they admitted him overnight due to his rash and fevers and initially suspected chicken pox. He was discharged on suspected chicken pox and we were told to keep him isolated, however, the rash didn’t eventuate to chickenpox type blisters so it became evident that was not it. His fevers were still spiking, his irritability was so out of character and scary at times. He would bounce between complete lethargy to raging and thrashing around, at times I just cried feeling helpless. On day 4 he began to have very bloodshot eyes which alarmed me and his father and after some googling I saw Kawasaki Disease and became worried. We agreed that if he was still feverish the following morning we would go back to the Emergency Department. The following morning off we went and we were told it was just viral to wait it out. The following day he developed a really nasty cough on top of everything he was already going through.
We felt helpless. Each night my partner and I would talk about how this isn’t right, something isn’t right – but what could we do? We had seen the doctors 4 times in one week. One day I even thought my house must be haunted and my son must be possessed – it is the only logical explanation! By day 12 his lips were constantly going blue, he still had spiking fevers, and his breathing was very fast so we decided to attend a different hospital and thank goodness we did. We kept saying to them “we know what it looks like but it’s not what it seems, something is not right”. We discovered he had Bacterial Pneumonia and RSV and they admitted him to treat those. At this point we were relieved that he was getting help and someone, anyone, was finally listening. Thankfully the following morning the Head of Paediatrics of that hospital was doing the rounds. She sat with me, saying there is some things that aren’t adding up, let’s go over his symptoms from the beginning. She diagnosed him with A-typical Kawasaki Disease on the spot.
He commenced IVIG treatment that night but continued to get fevers and 2 nights later he had another round of IVIG, 2 days after he had his first Echocardiogram. It showed moderate damage to his Coronary Arteries – so we were discharged to go home with Aspirin and a follow up Echocardiogram the next week. During that week he still wasn’t quite right, I was alarmed by his lips which were very purple, he had lost 3 kgs of his 15kg body weight but we were just so happy to have him somewhat back to himself. We attended the next Echo and left feeling quite hopeful that most of this was behind us till we received a 5.30pm call requesting us to come back tomorrow so that he could have a CT Angiogram under General Anaesthetic as they needed to confirm what they suspected, that the aneurysms had increased.
They admitted him after the CT and he commenced a round of IV steroids and he then stayed on steroids for another 4 odd weeks. He was in hospital for a week this time and we had to get our heads around the new normal – anticoagulant therapy. For the short term he had Clexane injections twice daily to ports in his legs that were changed mostly twice a week – this was a very difficult time and very traumatic for him. We eventually got him in therapeutic range for Warfarin but it was a very hard time. He was fortunately able to cease Warfarin in January 2022 and in July 2022 we received the news that Reuben’s coronary artery complications had almost fully resolved. This is the best news we could of hoped for. He will remain on aspirin and be monitored regularly with the wonderful cardiologist at PCH (Perth Children’s Hospital).
Reuben taught us a few things from his KD journey and those are that he is the most brave and incredible little boy – often braver than we are. He taught us that as his parents we must advocate and continue to push if our gut instinct doesn’t feel right , to seek a third, fourth or even fifth opinion and not feel silly about it. And we learnt that there is just not enough awareness out there. Our lives have been irrevocably changed and that’s OK, we have our heads around our new normal now and the support that is available from groups like the KD Foundation Australia has been wonderful