Parents band together to raise awareness of Kawasaki disease

Parents band together to raise awareness of this rare early childhood disease. Joan Chew finds out more.

When Ms Sunita Sue Leng's son was five months old, he came down with a bout of fever which did not go away after three days.

By the fourth day, Jun Kai, now 2½ years old, also had red eyes.

Later, at Raffles Hospital, the baby developed red lips, a rash and swelling of the lymph nodes in the neck. This prompted the paediatrician, Dr Chu Hui Ping of Raffles Children's Centre, to diagnose him with Kawasaki disease.

Said Ms Sunita, a 46-year-old freelance writer: "I remember staring at her in shock and thinking, 'There's a disease named after a motorcycle?' I had never heard of it."

Today, she has gone one step further by forming a new support group for caregivers of children suffering from Kawasaki disease.

The rare condition, which has no known cause, gives rise to inflammation of the small- and medium-sized blood vessels throughout the body, which can sometimes lead to problems in the coronary arteries of the heart.

When Jun Kai was hospitalised, Ms Sunita tried to read up as much as she could about Kawasaki disease online, but the information was mostly from the United States.

"At that time, I wished there was someone here whom I could speak to about this disease. I searched for a support group in Singapore, but couldn't find one," she said.

She and five other mothers are now plugging this gap by offering to share their experiences with other families whom they hope to link up with via their doctors and other medical professionals.

Back then, Jun Kai was treated with antibiotics, namely intravenous immunoglobulin, to relieve the acute inflammation and resolve his fever.

This medication, which is usually given once, also reduces the risk of someone with Kawasaki developing coronary aneurysms from over

25 per cent to no more than 5 per cent, said Dr Chu. A coronary aneurysm is when part of the artery that sends blood to the heart dilates abnormally.

This is the main danger of the disease, Dr Chu warned, as an aneurysm can block blood flow to the heart or rupture, either of which would cause death.

Jun Kai was found to have a mild dilatation of his left coronary artery. He was given aspirin to reduce the risk of a clot forming there. For several months, Ms Sunita had to crush the pills to mix them in his milk. Thankfully, further tests have shown that the problem has resolved, so he no longer requires medication.

RAISING THE ALERT

Looking ahead, the group hopes to reach not only parents but also, more importantly, general practitioners to be alert to the disease.

Of the seven mothers who responded to Ms Sunita's Facebook page in 2013, one later lost her 23-year-old son to a heart attack.

It was caused by a coronary aneurysm, said Ms Magdalene Tan, 43. Her son, the oldest of three children, was diagnosed with Kawasaki disease when he was an infant. While he had undergone an angioplasty procedure last year to widen the affected blood vessel, it narrowed again and caused the fatal heart attack.

"Although it was a tragic end for him, I hope something good comes out of our efforts with this support group," said Ms Tan, who works as a physiotherapist.

"We want parents to know that the condition can be reversed if it is detected and treated early."

Ms Sunita said the group, which held its first meeting last month at Suntec City mall, also wants to promote discussions on issues related to raising children with heart problems from Kawasaki disease.

These include questions on whether such children can take part in competitive sports, if the boys can go on to do national service and the types of insurance plans parents should get for these children.

As Ms Tan put it in a message on the group's Facebook page: "No parent should ever have to bury or cremate his child."

joanchew@sph.com.sg

For more information about the support group, go to: facebook.com/KawasakiDiseaseSupportGroupSingapore

This article was first published on Feb 19, 2015.
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