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CoRDS Registry

Kawasaki Disease Foundation Australia has partnered with Sanford Coordination of Rare Diseases (CoRDS) Registry.

This is an international and Central registry of individuals of any age who have been diagnosed with a rare disease. It was primarily developed to meet an unmet need for patient registries worldwide.

If you or a family member has been diagnosed with KD, you can help researchers see the whole picture.

To enrol in the CoRDS registry, or for more information, visit www.sanfordresearch.org/cords


Written by Chami Gunasinghe (2012)

 

Our baby boy Andreas Alexander whose name means manly warrior was born after a stressful pregnancy.

I noticed that my baby boy who normally loves his feeds was hardly taking in any milk. That night I caught my husband sneaking off from the kitchen with the baby Panadol in his hand to give to Andreas as he had a fever. By midnight that night the Panadol had not worked and his temperature reached 38.9 so we took him to the emergency room at Westmead Children’s hospital.

The next day things were not getting better, Andreas was not taking any milk and I actually resorted to forcing him to take some breast milk through a syringe to ensure he didn’t get dehydrated and his fevers were still not coming down. Andreas lymph nodes ended up being the size of golf balls and he was having trouble holding his head up. We called the ambulance and he was taken back to the ER at Westmead hospital.

Another long night was spent in ER doing a number of different tests, including a lumber puncture where they took fluid from his spine to check if he had meningitis. He was given antibiotics for this as the tests would take a while to be confirmed. None of the doctors knew what was wrong with him as the lumber puncture came back inconclusive. It was on the third day of our hospital stay that the doctors came and said they think he might have Kawasaki disease. They also told him that we would need to give him the immunoglobulin. I will never forget that phone call from my husband, I had gone to my parent’s house to check on our daughter and when my husband called and I remember bursting into tears.

I rushed back to the hospital and the next day the immunoglobulin (IVG) was administered to him intravenously. This was a scary process on its own as there is a high risk that the child could be allergic to this. Andreas had to go for an ECG and ultrasound of his heart to confirm if the Kawasaki had affected his heart. The tests showed that there was some dilation to the blood vessels in his heart. Another sleepless night was spent at home holding my baby boy in my arms as his temperatures went up and down and the next morning I took him back to the hospital.
This time they took us in straight away at the ER the doctors decided that he needed a second dose IVG and was admitted to hospital straight away. We were taken back to the same ward and again spent another long night as he was given the IVG.

The next day I watched my baby boy sleep and prayed that when he woke up I would see that little smile again. He then opened his eyes and gave me a huge smile. We then had to go through the whole process of ECGs, heart ultrasounds all over again.

We took Andreas home two days after his second dose of IVG and by this time he was starting to get his appetite back.

Andreas had to have aspirin for 6 months daily after he came out of hospital to thin his blood and still requires regular cardiologist checkups to monitor his heart. He is now two years old now but still not talking and we are not sure if this was caused by the Kawasaki as he was one of youngest known cases of Kawasaki disease in Australia.

Every day I look at his beautiful face and feel so lucky to have him in my life. He is truly my little fighter and is living up to his name of “manly warrior”. He is the most affectionate, beautiful, naughty little boy and the bond I have with him is truly amazing.

Since Andreas had Kawasaki I have started working for an amazing charity called HeartKids Australia that supports families and children of childhood heart disease. HeartKids supports children who have very serious heart conditions some who require many surgeries throughout their life as well as children with acquired heart conditions such as Kawasaki disease and rheumatic fever which is very big issue within our indigenous community. The charity not only financially and emotionally supports these families but also raises funds for research of Childhood Heart Disease which is one of the leading causes of infant death in Australia.

On a personal level I am thankful to all the doctors and nurses at Westmead hospital, my parents and family and most of my all husband who had to be strong for all us during that time.