A rare disease has just killed this young boy. One doctor believes he could have been saved
John Bore cuts the image of a defeated, fatigued man when we sit down for an interview at Gertrude’s Children’s Hospital in Nairobi.
For days he has slept on a cold bench outside the intensive care unit of the hospital as he watches over his firstborn son, Ian Kimutai.
Next to him is his wife Ann Chepkosgei. She has only spent an hour at the hospital today, but she feels like she has been here forever.
Their son, Ian, has been admitted here for 18 days, and the two have been taking shifts to watch over him. The long wait for their son’s recovery is taking a toll on them, and it shows.
Life, for this couple, has become a total, unpredictable mess. Ann has closed her business and John has taken leave from work.
Their younger son is in the care of relatives as all their focus and attention is now on Ian, who has spent the last nine days in the ICU.
“Doctors say his heartbeat is frail and needs to be boosted by the machines,” John explains. He thinks his son is getting better, but the journey here has been long and tiring.
Since January, he and his wife have been shuttling from hospital to hospital seeking cure for their ailing four-year-old son. They haven’t managed, but now at least they have an idea of what ails him.
“We had patiently waited for him for two years, and when God blessed us with him, we were beyond ourselves with joy,” says Ann.
“He loved running around and was always playful,” adds John. “Once in a while, of course, a common cold or fever would put him down for a day or two… but nothing serious.”
What the young family did not know was that all that playfulness was about to fizzle out and the once healthy boy would turn into a frail and sickly child dependent on hospital monitors.
“It all started one evening after school when Ian came home with a fever,” says Ann, her eyes darting blankly around the waiting bay at the ICU section of the hospital.
Her first response was to get an over-the-counter fever medication for her son, but the drugs never worked and Ian’s temperature kept shooting up.
“One evening in the middle of January,” says John, “I came home from the office to find him curled up in bed. I decided to take him to a nearby clinic for a proper check-up.”
That was almost three weeks after Ian first reported to school in Nakuru. In his parents’ minds, he would fight off the viral fever and go back to school.
But that was not to be as within weeks Ian’s condition moved from bad to worse. Weeks turned to months, and yet no doctor could conclusively tell them what ailed their son.
One afternoon in June this year, following a series of hospital visits, Ann started noticing strange markers on Ian’s health.
He could not get up and go to the toilet, for instance, and both his ankles were swollen. Two days later, his stomach started swelling.
A paediatrician who had treated the boy earlier decided to admit him to his Nakuru hospital for a thorough check-up.
“The doctor said my son had symptoms of arthritis, but I challenged the diagnosis since I had only heard of arthritis in adults and not children,” says Ann. The doctor advised her that children are also sometimes affected by the disease.
But the boy’s condition kept getting worse and his parents decided to move him to Nairobi for more specialised care.
“We did a couple of tests, one of them on his bone marrow to rule out cancer of the bone marrow,” says John.
All the tests turned negative and the doctors advised that Ian be admitted at Gertrude’s Children’s Hospital for more advanced check-ups.
And that was how, eight months after the initial fever and countless trips to hospital, Ian Kimutai Bore was diagnosed with a rare childhood illness, known as Kawasaki, that affects the blood vessels throughout the body.
The disease primarily affects children and can harm the coronary arteries, which carry blood to the heart.
Kawasaki disease, says Dr Charanjeet Kaur Jandu, a paediatrician, was first thrust into Kenya’s medical limelight three years ago when a patient from Uganda checked into the Aga Khan University Hospital.
Just like in young Ian’s case, the patient was below the age of five and had presented with an incessant fever.
“She was a young girl who had been diagnosed with a viral fever back home in Uganda,” says Dr Jandu.
“But when I examined her I realised that she was actually suffering from Kawasaki.” The little girl, who has since been cured and gone back home, was just the first of four other patients who would pass through Dr Jandu’s hands in a short while.
“I was again called in when a patient, admitted at the hospital with fever and abdominal pains, stopped responding to antibiotics,” she recalls. It was Kawasaki, again.
The disease affects children aged five years and below, and is usually treatable. It is rare and its causes remain unknown. The only symptoms that are easy to pick out include a fever that is usually high and lasts for more than five days, a rash over the trunk and limbs, and swelling of the feet and hands.
“The fever does not go away with the usual medication,” says Dr Jandu, “and often the fingers and toes start peeling three to four weeks after onset of the disease.” Sometimes, she adds, the child can be very irritable and fretful, and may also not eat well.
“Failure to diagnose the disease early delays treatment and further complicates the patient’s situation. That is why whenever we see a case of Kawasaki, we call in a cardiologist to assess the patient’s heart condition.”