Heartkid Stories

Andreas, NSW

andreas1

Our baby boy Andreas Alexander – whose name means manly warrior – was born after a stressful pregnancy where I was put on home rest for the first 6 months of the pregnancy.

The day he got sick started off as any normal day, except that I noticed that my baby boy who normally loves his feeds, was hardly taking in any milk, I put this down to him becoming an expert at feeding and didn’t think too much of it. That night I caught my husband, knowing the paranoia and anxiety I get when my kids are sick, sneaking off from the kitchen with the baby Panadol in his hand, when I asked him what he was doing with it he told me that Andreas had fever and we should give him Panadol. By midnight that night the Panadol had not worked and his temperature reached 38.9 which is pretty high for an infant so we took him to the emergency room at Westmead Childrens hospital, which meant calling my parents at midnight to pick up our 3 year old daughter. After a sleepless night in the ER we were sent home saying he had a virus and just give him plenty of fluids and Panadol.

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 even with regular Panadol and Nurofen.  While I was getting our daughter to bed my husband brought Andreas in to our room and asked me to have a look at his neck, his lymph nodes were the size of golf balls and he was having trouble holding his head up. Fearing it was meningitis we called the ambulance and he was taken back to the ER at Westmead hospital less than 24 hours after our last visit.

Another long night was spent in ER doing a number of different tests on him including a lumber puncture where they took fluid from his spine to check if he had meningitis. He was given antibiotics for this intravenously in case it was meningitis as the tests would take a while to be confirmed.  He was admitted to hospital on antibiotics but none of the doctors knew what was wrong with him as the lumber puncture came back inconclusive and he was not reacting to the antibiotics. His fevers were still very high and would still not completely go down even with Panadol. On our second day  in hospital Andreas started getting other symptoms of Kawasaki which included swollen hands and feet, blood red lips and red eyes. It was on the third day of our hospital stay that the doctors came to my husband and said they think he might have Kawasaki disease except there was no test to confirm if this. They also told him that we would need to give him the immunoglobulin and the further we held off from giving him this it could have serious effects to his heart.  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 think it was the unknown that effected me the most. It’s scary enough to have your 3 month old baby boy in hospital but to be told he has something you have never heard of before except as a brand of motorbike was pretty scary. Me being the crazy googler than I am wanted to go straight into research mode but my husband said our doctor told him specifically not to do this as some of the information on the net could be quite scary and upsetting for us as Kawasaki is a relatively new sickness and there is still no known reason as to how a child contracts this.

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 so his blood pressure, heart rate etc had to be monitored hourly while he was receiving the treatment.  Over the next very long 12 hour period with some scary stops and starts where we thought Andreas was having a reaction the medicine he received a full dose of IVG.  The next morning I saw a faint smile from my baby boy.  Andreas had to go for an ECG and ultrasound of his heart to confirm if the Kawasaki had affected his heart. I remember sitting outside the in the waiting room trying hard not to cry while my husband took him to do the tests.  The tests showed that there was some dilation to the blood vessels in his heart and this would need further investigations and monitoring over the next few months to ensure that they don’t get bigger. His fever also went down a little after the IVG and doctors prepared to send us home the next day as they felt home care was best for him, but my mother’s instinct told me that he was still not better. However we took the doctor’s advice and took him home the next day. We decided to stay with my parents that night but just as my mother’s instinct had told me that he was still not better. Another sleepless night was spent holding my baby boy in my arms as his temperatures went up and down and the next morning despite my parents and husband asking me to give it more time I demanded that we take 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 sleepless 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 bright little smile again and this time he didn’t disappoint me he opened his eye and gave me a huge smile. We then had to go through the whole process of ECGs, heart ultrasounds all over again and I sat outside in the waiting room while my husband was inside with him praying that the delay in getting him the second dose of IVG had not made the blood vessels in his heart dilate further but they hadn’t.

We took Andreas home two days after his second dose of IVG and by this time he was starting to get his appetite back but was very restless and cranky and required constant attention.

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.

We spent 10 days in hospital with Andreas in total, 10 long days waiting, hoping and praying that he would be ok and 10 long days away from our beautiful little girl who stayed with my parents during this time. 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 have learnt to trust my mother’s instinct and it was the fact that I took Andreas to ER as soon as I felt his fever was high that the doctors were able to diagnose his condition early enough that he was able to have the IVG at an early stage. I am thankful to all the doctors and nurses at Westmead hospital, my parents and family and most of all my husband who had to be strong for all us during that time.