Recently, there has been news that a number of children with COVID-19 develop severe complications. Doctors have seen an inflammation…
that is similar to Kawasaki disease. The word “Kawasaki disease” triggered something that I haven’t thought about for a long time…
I felt it in the pit of my stomach, “Something is not right.” Our son, Neil, who was just under two years old, had a very high fever. I took him to the pediatrician that morning and came home with the usual pink cold syrup medicine. But, even after taking that, I felt something was still wrong with him. Call it a mother’s instinct, but we sense when something is a bit off with our children.
“I need to take him in again.” I told Chita, our nanny. A few hours later, Neil looked a bit strange. His lips were strawberry red and the white of his eyes was blood red. He was quite a fair baby, so the contrast was quite scary. And his temperature wasn’t going down. I didn’t wait any longer and headed back to the clinic.
The doctor took one look at Neil and said, “He has Kawasaki disease. You must go to the hospital right away.” My heart raced. “What’s Kawasaki disease?” I never heard of it before and I was frightened.
Here is the version from the Mayo Clinic: “Kawasaki disease causes swelling (inflammation) in the walls of medium-sized arteries throughout the body. It primarily affects children. The inflammation tends to affect the coronary arteries, which supply blood to the heart muscle.”
I needed to get to the hospital right away. And yes, Neil was admitted immediately. Fortunately, he was treated immediately with immune globulin. This medication brings down the inflammation which helps the body recover immediately. And our baby was starting to look like himself again. I felt so relieved.
If not treated within the first 10 days of catching the disease, it can lead to permanent heart disease. In fact, it’s the leading cause of heart disease in children. In most cases, the children fully recover if treated. The frightening part of Kawasaki disease is that sometimes if the child doesn’t have many symptoms, it’s misdiagnosed as a high fever. Because the child recovers, the parents have no idea their child may now have a defective valve or heart.
Over the years, I’d read about children who are running track or playing football and just collapse and die. I’d always think, “they may have had Kawasaki but they didn’t know.”
We lived in Singapore at the time. And a couple of months later my husband was transferred to Kuwait. New to the country, we were placed in temporary housing for several months while we searched for a place to live. With advice from my mother, we decided to look for a place that was near the school, had good access to grocery shopping and other activities.
I ended up choosing a flat that happened to be new construction. The owners were on the ground floor, we would be on the second floor and there was a small flat on the third floor. Unlike the U.S., in Kuwait, we had to get our own carpet and curtains. We also purchased our refrigerator, washer, and dryer.
I was so excited when we were finally able to move in. It felt new, clean, and very open. It looked great!
We were just feeling settled, so my husband scheduled his three-week business trip to China. Fortunately, I had help. Chita, our nanny had just arrived from Singapore.
The following day, Neil wasn’t looking well, so I decided to take him to the pediatrician. I found a Syrian doctor who was fluent in English. It was our first visit, so I filled Dr. Hafez with Neil’s medical history with Kawasaki disease. After examining Neil, the doctor said he wanted me to monitor him carefully.
Later that day I felt that pit in my stomach again. “Something’s not right.” My mother’s instinct kicked in again. Neil looked a bit swollen and started to get hives all over his body. His temperature wouldn’t go down either.
In Kuwait, businesses operate in the morning and close at 2:00 pm. They take a little siesta. They reopen in the evening at around 5:00 pm. This is to avoid opening when the sun is the hottest.
As I opened the door to the doctor’s office, with Neil in my arms, the doctor looked at me with that, “I was expecting you folks” look. “Hi doctor, Neil isn’t right.” I lay our son on the examining table. “I don’t know what it is but, I don’t think it’s just the flu, he’s swollen.”
While examining him, he said, “he has Kawasaki disease.”
“No. His symptoms are completely different. His lips are not strawberry red, the white of his eyes are not blood red. He has hives and his hands and feet are beginning to swell. It’s not Kawasaki.” I replied.
It must have been a doctor’s instinct. While walking to his bookshelf, he told me, “I looked it up after you left. There are multiple symptoms. Just because he isn’t showing certain symptoms, it doesn’t mean he doesn’t have the disease. ” He opened his medical book to show me that Kawasaki disease can show multiple different symptoms.
“Look” he continued, “I want you to go to the national hospital because they will have the proper medicine for him. Go tonight.”
“No, doctor, it’s really different!” I insisted.
“If I am wrong, okay. But what have you got to lose? If he was my son, I would go.” said Dr. Hafez.
I let out a big sigh and felt weak, “True, he’s not right, I’ll go, what have I got to lose.”
Dr. Hafez wrote a letter to the hospital in Arabic for me. “Give this to the doctor.” Then he wrote something on a small piece of white paper and handed that to me too. “This is the address of the hospital in Arabic. Give it to the taxi driver.” I carefully carried Neil and held him tight. I thanked the doctor and caught a cab home in silence, just staring at my baby’s swollen face.
Our little two year old was suffering and I couldn’t do anything about it. The doctor was right. I had to get him checked at the national hospital. I packed an overnight bag. I hugged our two older sons and Chita. We could barely exchange words, we were so scared. It was already dark when the taxi arrived. I handed him the small white piece of paper and we drove in silence. By the time I got to the hospital, Neil’s body was limp. The thoughts in my head were not good.
The doctor finally saw us and I lay Neil on the table. I opened my bag and gave the doctor the letter. He carefully examined Neil and said, “Kawasaki.” I felt numb. He had to be admitted immediately.
The blood drained from my face. The doctor knew what I was thinking. That’s when he said the words I will never forget. “You must be strong. Remember it’s not fatal.” I looked at him and said, “it’s not fatal?” “He will recover.” I let out a big sigh of relief, Neil was going to live.
The next few days were challenging. I couldn’t speak Arabic and the hospital staff couldn’t speak staff English. Because it was a weekend, the main dispensary was closed and they couldn’t get the right medication to treat him. The company managed to contact my husband in the middle of China, and they were arranging for him to fly home. There was just a lot going on.I was freaking out because Neil looked worse.
I called Dr. Hafez the following day. ” Doctor, his hands are now like boxing gloves, he’s so swollen. and this whole body is swollen. They haven’t done anything!” “Don’t worry, it will get worse before it gets better,” reassured me.
The doctor was right. I’m happy to say that after a week’s stay, Neil fully recovered and was able to go home. And Daddy managed to get home to see him too.
For the next 15 years, we had to go to the cardiologist. He had some heart valve issues and they wanted to monitor him because they were doing research on the disease. Later we found out that only 2% get the disease twice. And for some reason, it’s more common in boys of Asian descent who are under the age of 5. At the time, we weren’t sure if Neil would be able to play any sport in the future. But, every year the doctors gave him the green light to play.
When Neil was a freshman in high school, he wanted to play football. He did peewee football, but high school was a different level with all their practices. I talked to his heart specialist. He decided it was best to do a heart stress test and if it came out “normal” then he would be allowed to play any sport like any other healthy young man. It was a great day when he passed the test. It was a happy day for our family.
For many years after this experience, I tried to reflect on why he got Kawasaki twice. Of course, I’m no doctor. But, from our real-life experience I believe it was the toxic fumes from the paint and the carpet off-gassing, that triggered his little body. Both times, we were in housing that had just been freshly painted. Everything was new. And we didn’t wait, we moved right in.
Also, it only affected our two-year-old. His brothers who were four and seven weren’t affected. I’m guessing it was because their organs and immune system were more developed, I don’t know. It’s just my mother’s instinct.
Today, many companies have paint that is more environmentally friendly. Look for low VOC paint. They may not last as long on your walls, but you won’t be breathing in all those toxic fumes. This is really important if you’re currently living in your home and painting and have young children.
Please, please, be careful and use low VOC paint. Remodeling and painting are fun because it really improves the space, but just as important for our health are things like this that we can’t see, but can truly cause damage.Stay safe everyone.!