James’s story

At ten weeks old James had a bad night crying continually, not the normal cry to be fed or changed, it was a constant whimper. After such a sleepless night he was asleep in his chair by 11.00 am. I fed him at midday but he was immediately sick, so I took his temperature, it was 37.6, so I rang my mother who advised me to give him a dose of Calpol and to let him sleep to fight off the bug.

James woke at 2.00pm and I changed his nappy.  He had a red pin prick rash across his back, the image still haunts me. I got a glass from the kitchen and rolled it across him hoping the rash would disappear, but it didn’t. I was thinking of meningitis and its symptoms. I rang James’ father to tell him and got in the car to take him to hospital, I have never moved faster.

We arrived at A & E in Wrexham, I hoped the nurse would tell me that I was panicking, being over protective and not to worry, this happened all the time. How wrong I was. We were in the High Dependency Unit on the children’s ward before I knew it. By 5.00 pm James had had blood tests, urine tests, a lumbar puncture and had started a course of strong antibiotics.

Three days later James was still not responding to the antibiotics and Alder Hey were monitoring his progress.  We spent sixteen days on the ward not knowing what type of illness he had; it was thought an unknown a virus was doing its worst.

James was eventually diagnosed with Kawasaki Disease and treatment began.  We had never heard of Kawasaki Disease, we associated the name with motorbikes.

Kawasaki disease (or syndrome) is a rare acute childhood illness that hits out of the blue, mainly affecting children under the age of five.  The cause of Kawasaki’s is unknown; it is thought that a virus triggers a rare immune reaction in certain children.  It is an inflammatory process that can affect almost every system in the body, although the arteries that supply blood to the heart (the coronary arteries) appear specifically affected and this was the case with James.

After a course of immunoglobulin and four weeks in hospital, follow up tests revealed that he had developed a rare complication – two large coronary aneurysms. Both aneurysms were 5mm at diagnosis; they now appear to be regressing and are currently around 3mm.  James now takes 75mg of aspirin daily and is monitored closely by the cardiac team at Alder Hey.  The hope is that as James grows, the aneurysms will shrink and the arteries will return to a normal size.  There is the risk of scar tissue forming which can be corrected by a stent – however all the signs so far are positive and the aneurysms seem to be slowly reducing in size.

We keep an eye on James to check for any nasty bruises because of his medication, he also tires easily, and I panic every time he gets a cold! James isn’t bothered by any of this, he is a happy six-year-old, who loves to run everywhere and lives life to the full.

Read the CHF information sheet about Kawasaki disease.

Further information is available here.


Story Update 2022

James is now 11 years old and is pictured having an ECG at his check-up at Alder Hey.

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