It all started when he was just 14 weeks old.
On the second day of his fever, we brought him to the hospital. He was given antibiotics, then discharged after a night’s stay the next day. A blood test was done, but there was no conclusion as to what was causing the fever.
That very night, after we were discharged from the hospital, HaoMing’s fever went up to 40 deg C. The temperature didn’t drop, even after we gave him his medication. His pee was orangey because his milk intake had dropped drastically ― he had taken less than 300ml in the last 24 hours.
“His eyes were bloodshot, and his lips became very red and cracked.”
We rushed back to the hospital, but we were turned away because there weren’t enough beds, so we had to go to the National University Hospital (NUH) instead. It was a mad scramble at 1.30am that morning.
At this time, we did not know anything about the disease. I was tired to the bone as it was already the fourth day of me getting only two hours of rest each day, taking care of HaoMing.
I couldn’t absorb much of what the doctors were saying and just trusted them to treat him. I only recognised the word ‘measles’ and wondered where he could have gotten it, since he was so young and we didn’t even go out much. We were moved to an isolation ward for a few days until the blood test showed for certain that it was not measles. The doctors decided to give him IVIG, or Intravenous Immunoglobulin, on Day 5.
We took turns to be at the hospital, and we made an effort to take of ourselves, so that we would be in the right condition to care for Haoming. We had to be sensible, so that things wouldn’t fall apart.
HaoMing went through two rounds of IVIG and two rounds of high dose steroids. To watch the treatment fail one after another when it had seemed to work on other children was just disheartening.
By the second week, HaoMing had developed giant aneurysms in one of his arteries. The cardiologist told me that I had to be prepared for his sudden death.
In other words, Haoming could get a heart attack and die anytime. To prevent him from getting a stroke, he was on anti-platelet drugs and blood thinners to reduce his chances of getting a blood clot.
After three weeks in the hospital, the doctors started getting dismayed over why no medicine or drug was working on HaoMing.
After being hospitalised for four weeks, he was diagnosed with Kawasaki disease ― a childhood illness that causes inflammation of the small- and medium-sized blood vessels throughout the body. He was given cyclosporin, an immunosuppressant drug, which finally started showing results.
After a drug that HaoMing responded to was found, he was discharged from the hospital. It would take about three more months before the last signs of the inflammation were gone.
Then, he had to be weaned off slowly from the steroids and cyclosporin. As a side effect of the cyclosporine, he developed a lot of body hair and even a shadow of a moustache. Thankfully, he seemed to escape the more serious side effects of the drugs.
As a side effect of the cyclosporine, he developed a lot of body hair and even a shadow of a moustache.
HaoMing is now growing well and developing normally. He has passed the danger period where there was the ‘highest risk of a heart attack’.
I would like to call to attention to several misconceptions about Kawasaki disease. First, there is the notion that Kawasaki disease affects people mainly of Japanese or Korean descent ― this is not true. Kawasaki disease affects everyone and there are insufficient statistics to point to any demographic because it is extremely hard to diagnose.
Second, patients who have recovered from artery dilations may think that they do not need checkups anymore, but this is wrong. They should have regular cardiac checkups for the rest of their lives.
Finally, some people think that Kawasaki disease is a condition that only affects the heart. Actually, Kawasaki disease affects other internal organs, like the kidneys, too.
Take note of the symptoms. If your child has Kawasaki disease, one of the symptoms will be a high fever that won’t subside with paracetamol. The child will have a rash, red lips, bloodshot eyes, strawberry tongue, and swollen lymph nodes in the neck.
The difference between HaoMing and other children now, is that he will be on blood thinners and anti-platelets medication all his life. He won’t be able to play contact sports because he bruises easily because of his blood thinners. He’ll have to go for regular cardiac checkups.
But we are grateful that he will still be able to lead a normal life.”
Serene Chew is a stay-at-home mum to HaoMing, 19 months. She shares his fight with Kawasaki disease here. For more information about Kawasaki disease, visit the Kawasaki Disease Support Group Singapore’s page.
Photos: Serene Chew
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