Meagan’s passion for the Foundation and helping families came when her 7 week old daughter almost lost her life to Kawasaki Disease in early 2018. Meagan joined the Foundation in March 2019 as Vice President and became President later that year.
Meagan is a busy Mum of two (Rafe and Aurora) and works Part-Time for a large Travel organisation. Meagan volunteers her spare time to the Foundation, organising events and helping raise awareness about Kawasaki Disease.
Aurora’s KD story:
It was the 14th March 2018 – that date will be etched in my memory for the rest of my life. I knew she wasn’t right! She hadn’t been well since the rash (which was 2 weeks prior and involved 48 hours in hospital) but the doctors always had a response as to why she was behaving the way she was….. “it was a virus, she irritable due to the antibiotics, she’s unwell due to the vaccinations”. Something just wasn’t adding up and of course at this point after endless visits to the hospital, GP’s and calls to 13HEALTH I started to feel like I was being over the top. Regardless of that I took her back to the GP on the morning of the 14th March (Wed). She had had her vaccinations on the Friday prior and of course over the weekend she showed the “normal” side effects such as irritability, more sleepy, clingy etc. But she was still feeding so I was hoping that it was a faze and would pass. Well it didn’t and then on the Wednesday when she started refusing feeds I was beside myself with worry. Another visit to the GP, call to Breast feeding hotline, 13HEALTH, another “Go home, your baby is just reacting to the vaccines, have lots of skin on skin & bed rest”. Well…. that night still haunts me – the look on Aurora’s face said it all… I knew she was really unwell by this point. I had attempted to give her a bath and do some more skin on skin. I hoped the bath might relax her and make her feel better. I was wrong… it seemed to make her worse. She was crying and beside herself. She had turned grey, her breathing went rapid, then the look in her eyes – she was scared…. I went to phone 000 and then something told me I would get to the hospital quicker if I drove (thankfully we were just around the corner from the Prince Charles Hospital a 10 min max drive). It all happened so quickly but I bundled Aurora into her capsule, Rafe (my 20 month old son) in his carseat and rang Ryan (my husband) all within a matter of minutes. He luckily had just gotten off the train and ran home – he arrived as we were pulling out of the driveway, jumped in and we drove straight there.
Then, the sequence of events that took place from here is what kept our baby girl alive. From the minute we got to the ER, to the quick acting nurses and doctors, to the retrieval team, to the Surgeon who put her on ECMO (Extracorporeal membrane oxygenation) and to the Paramedics. They all played a part in Aurora’s survival.
She had to be resuscitated as soon as we got to Prince Charles. Thank god we only lived 10 mins away…. I used to play back that night so many times in my head with the What if’s… but now, I try not to torture myself as we are so very lucky that we still have Aurora here with us today.
That night is so vivid, yet so clear at the same time! I remember so many people in the resus room with her – they kept coming out asking us so many questions trying to piece together what had got us here that night. I remember one GP that just kept saying to me your baby girl is very sick, asking me this and asking me that. In the end I felt like screaming at her “YOU SHOULD KNOW, YOU SAW HER 2 WEEKS AGO WHILST WE WERE HERE!!” No one should ever make a mother feel the way that GP made me feel that night!
Once they had stabilised Aurora they let us go and see her – she was so tiny laying there on this big bed. She didn’t look like my baby girl anymore, she had tubes coming out everywhere. I kissed her on her forehead and told her that she had to get through this… She had to keep fighting! She’s got big things to do in this world, so don’t give up. From that point my Husband and I tried to stay positive…. we didn’t let a negative thought enter our minds and when it did we just reassured ourselves that she was going to be ok, she just had to be.
But by no means was she ok. They did all that they could for her at the Prince Charles but they needed help – they sent the retrieval team from Lady Cilento. Ryan & I weren’t sure what was really happening but we just wanted to stay out of their way and let them do what they had to do to keep Aurora alive. When the team arrived one of the amazing Nurses was trying to talk to us and explain what they were doing all whilst tending to our baby girl. Again, I will never forget Sandra and Mikyla. Unfortunately the trip to LCCH, was one they will probably never forget either – they had to perform CPR on Aurora the whole time. By the time they got there, Prem (another amazing Human Being) was waiting for the ambulance with the ECMO machine all ready to go (ECMO essentially takes over the heart and lung function and breathes for the child). He cut her open and had her on ECMO within 15minutes which is beyond a miracle.
Ryan and I were told that there wasn’t enough room in the ambulance to take us and thank god for that as I think we would have just been in the way and would have been a lot more scared if we had to see that on top of everything else we had already endured that night. When we got to LCCH we were greeted by another 2 amazing human beings (Nicole & Sebastian) and again I will never forget them. They took us to an interview room and updated us on what had just happened. The only thing that I wanted to hear was that she was still alive…. the rest didn’t matter. I knew she was been looked after by the best people and that somehow they would get her better.
We still had no idea why we were here…. why was Aurora so sick? I just kept thinking she had some really bad reaction to the vaccinations… but I knew it had to be something more and in the back of my mind I knew it had to be something to do with the rash and so called virus that had her hospitalised a couple of weeks before.
At some point that night one of the surgeons mentioned to us Kawasaki Disease…. we had never heard of it. When they cut Aurora open they noticed all her coronary arteries were massively dilated (this is one of the major symptoms, along with a rash, red eyes and a temperature, all which Aurora had had). They also mentioned that her heart was still beating so we held onto this fact for the next 3 weeks in the hope that she did not have any damage to the brain (20 minutes performing CPR is a long time!)
Aurora was in PICU for 11 days in total and another week on the ward. She was on ECMO for 30 hours – once they suspected the KD they treated her for it straight away and she responded it to so well. She had 2 x rounds of IVIG (which is an intravenous immunoglobulin) and steroids. She had giant aneurysms which one had clotted causing her to go into cardiac arrest. Aurora was on a lot of meds during her time in hospital. After the inital treatment of the KD she was then placed on Heparin (to avoid any future clotting), Lisinipril (to assist with her high blood pressure) and so much more.
Aurora had a very accurate phase of KD, however if it had been picked up the first time and she was treated appropriately none of this would have ever happened.
Once Aurora was moved to the Ward she was weaned off the Heparin and moved onto Clexane – which was twice daily injections. Whilst in the hospital this was administered through the IV, however when she was discharged Ryan had to give this to her in her tiny thighs via a needle.
Aurora was on clexane for six weeks and was then readmitted for her Warfarinisation (this was another week in hospital trying to get her INR levels right).
Aurora is now three years old and currently on Warfarin & Aspirin. She has six monthly check ups at the hospital with Cardiology and Haematology, and annual check ups with Rheumatology and Vascuilitis specialists. She is also on a waiting list for an angiogram.
Ryan and I want to share our story, as hard as it is, so that we can educate parents, medical professions, teachers, daycares, schools etc that KD doesn’t always have to be “typical” there are 6 symptoms however a child doesn’t need to present all these symptoms at once. Aurora was “a-typical” as she was so young – typically KD is found in children 6months – 5 years, however children younger and older have been known to have it. She only had the rash, red eyes and temperatures. No strawberry tongue or peeling fingers.
Unfortunately there is no test for KD, they do not know how children get it and gets misdiagnosed too often. There are around only 300 cases a year, however it is on the rise.
We don’t ever want another parent to have to go through what we did! We want to share our story so that we can help other families and save another little heart.