Aleksi is a happy, positive and curious boy who likes cars, Lego, Star Wars – and dizzying bounces on a trampoline.
A day in early April was a day like any other in the light-filled home of the Virtanen family. This family of five live in Hyvinkää’s Tanssikallio district. The sun was shining, spring was on its way, and Aleksi was about to leave for his day care centre with his mother Anu.
In the morning, she had noticed hives on Aleksi’s back and stomach. However, the boy was his happy and cheery self, so they set off, and after talking with staff at the day care centre, Aleksi was allowed to stay and play with his friends.
The next morning, Aleksi developed a high fever. He had had fevers before, but rest and medication had always helped. However, the old remedies were not effective this time. The fever remained high for several days and Aleksi developed more symptoms along the way.
“At first, Aleksi's eyes became red, then the redness spread around his mouth and on his tongue. At one point, he had stomach ache and diarrhoea”, Aleksi's mother Anu Virtanen says.
Hospital on the fifth day
When the symptoms had lasted for four days, the parents took their exhausted son to the hospital emergency clinic. The first diagnosis was an adenovirus, or inflammation of the throat, and the boy was sent home with fever medication. The next day, they went to a private clinic to consult a familiar paediatrician: the fever had held its ground, and Aleksi's lips were beginning to dry out and crack.
The family trusted the doctor, who they had been seeing since their first child was born eleven years ago. This time, the normally cheerful and joking doctor adopted an unusually serious tone. He began seeking information on his computer before telling them that he suspected Kawasaki disease, which he had once come across a decade ago.
The doctor wanted to refer them to the hospital to have the diagnosis confirmed.
“At that point, I really started to worry. I did not know anything about Kawasaki disease, but I realised that it is something rare and serious,” Anu says.
The mother and son set off for the hospital a few kilometres away.
“The journey was a blur; I remember hardly any of it. I called my husband, Jani, in Helsinki, and he left work straight away to set off for the hospital. I only had one idea in my mind: we need to find out what is going on quickly.”
Rapid recovery with the right treatment
At the hospital, Aleksi was soon given a private room and placed under observation. The doctor and nurses were baffled: they were frantically searching for information in books and on the Internet.
Eventually, the hospital also came to the conclusion that all the symptoms pointed to Kawasaki disease. They found out that it is a rare childhood disease that affects the blood vessels. Each year, some 30 children suffer from it. Now Aleksi is one of them.
They began to treat the symptoms with intravenous immunoglobulin, antibiotics and blood-thinning aspirin. Aleksi's condition was closely monitored around the clock, and in addition to keeping an eye on his blood pressure, they monitored his blood oxidation levels and general state of health.
Anu remembers only too vividly the moment when they began to insert an IV cannula into the back of Aleksi’s hand for his medication. The father stayed with the boy; the mother was firmly ushered outside the door.
“I started to walk down the corridor. I will never forget Aleksi’s screams; I could hear them at the other end of the corridor. It felt awful knowing that the little boy had to face all those needles.
Fortunately, the diagnosis proved to be correct, and the treatment began to take effect quickly.
“The initiation of medication was discussed in depth, as immunoglobulin is really expensive, and they do not want to give ”in vain”. On the other hand, Kawasaki disease can cause blockages in the coronary arteries, so the medication should not be delayed,” Anu says.
Private room and a surprise discovery
Aleksi and one of the parents stayed in hospital for four days. The infection-prone patient got his own room, with a window facing a deserted sandpit in the playground.
A bed was brought in for the parents next to Aleksi’s bed, so that he could spend the nights sleeping next to his father or mother. They spent the days watching DVDs, reading, and playing with his toys. His 9- and 11-year-old big brothers and grandparents also visited them.
Life is full of choices, some of which seem to be contradictory to say the least. This was made clear as soon as they arrived at the hospital.
“Jani stayed at the hospital the first night, because I had to take an exam the next morning. I realised that I had to go and take the exam because missing it would have delayed my occupational studies by several months. It felt absurd, trying to get to grips with the official Swedish exam when all I could think about was my child lying in hospital,” Anu says with a short laugh.
The examinations revealed another surprise.
On the second hospital day, Aleksi, with his father and a nurse, was taken by ambulance to the Children’s Hospital in Helsinki for an echocardiogram. The aim was to find out whether there had been any changes in the coronary arteries of the heart.
Fortunately, there were no changes – but they discovered an atrial septal defect in his heart that should have closed on its own. This defect has nothing to do with Kawasaki disease.
Thanks to this discovery, the situation can now be monitored and specialists can assess whether a closure-device is required, or whether the defect can be left to its own devices.
In good hands
The hospital stay went well for Aleksi. At just over three years old, the boy was happy to be there with his parents. Matters were helped by the extremely warm-hearted and dedicated staff.
“The lovely nurses and doctors treated Aleksi without rushing, putting time and their hearts into it. They knew how to deal with him as a patient, but also understood our needs as parents. We really felt like we were in good hands.”
For the parents, the hardest part was the uncertainty at the beginning – and being able to do so little.
“The staff were responsible for the care, so we had to focus on what we could do: staying close, reading and applying cream to the itchy rash areas,” Anu says.
The cream was necessary, because in hospital, and at home, Aleksi suffered from almost unbearable itching all over his body. No apparent reason was found for the itching, and even the slightest perspiration made it worse. Apparently, it was caused by the aspirin prescribed for thinning his blood and minimising the burden of the coronary arteries. When the medication was ended, the itching stopped.
Aleksi has been well since recovering from Kawasaki disease. A cardiac ultrasound control was carried out two weeks after he left the hospital, and he had an annual control visit last April.
Putting things into perspective
Aleksi’s disease made Anu stop and rethink her attitude towards many things.
“On the one hand, I worry about the children more, and on the other, I try to enjoy the moment and not focus on small, everyday challenges. Perhaps the experience also made us stronger as a family: we got through this.”
Without blood donors, Aleksi would not have received the necessary medication and recovered from this serious illness. And without the disease and the immunoglobulin Aleksi received, Anu would never have contemplated the various uses of donated blood.
“I would encourage everyone to reach out a helping hand – or encourage others to do so if you are unable to donate blood for some reason. You never know when you or someone close to you might need blood products to recover, or even in order to survive,” she says.
Text: Sari Lapinleimu / Mediafocus
Photos: Susa Junnola
Published in 2016