In August, Saimi went back to daycare after the summer break, and Jana did the daycare runs as before. Elli was on parental leave and I was working, although that mostly meant working remotely from home. The days flew by. In the afternoons we often cooked and then all ate together, and sometimes Jana stayed for dinner at the end of her shift. Weekday evenings we spent at home, the four of us, and they were largely taken up with taking care of the children and feeding them. As before, Saimi usually fell asleep in Elli’s arms. I would then move her to her own bed and often stay beside her until the night nurse arrived. At weekends Saimi usually had a day carer on at least one of the days, sometimes on both. On those days we normally spent the morning together as a family, going for a walk in the forest and to the swings, for example. The carer came after Saimi’s nap, and in the evening it was just us again. The routine worked well, and Saimi enjoyed always having something going on.
In the autumn, we received the decision from the Patient Insurance Centre (PIC) on compensation for the patient injury Saimi had suffered in 2020. PIC concluded that her brain damage might have occurred before the medical error. That was possible, but there was hardly any evidence for it. Saimi had been in round-the-clock hospital care since birth, so her condition had been closely monitored the whole time. However, before the error, there had been no signs of brain damage, nor had anyone suspected it. What is known, on the other hand, is that prolonged very low blood sugar – which was proven to have resulted from the error – is highly likely, if not certain, to cause extensive brain damage.
Since the error was undisputed, and even in PIC’s view it certainly had some consequences, Saimi was paid a few thousand euros in advance compensation for temporary and permanent harm. PIC held, however, that the permanent consequences of the injury could not yet be determined, and that Saimi’s situation could be reassessed in 2027. It relied on statements from its experts, which I had earlier been given the chance to respond to. The statements skirted around the issue and were defensive rather than objectively focused on Saimi’s actual situation. For my part, I pointed to assessments by several of Saimi’s doctors, according to which she had a permanent, severe intellectual disability and would always need intensive round-the-clock care. If anything, her care could only be expected to become more demanding. I insisted that PIC make a final decision on compensation, but it refused.
In practice, PIC was trying to avoid liability and deliberately delaying payment. I had heard similar stories from other people who had suffered patient injuries. We had no intention of waiting three years for the next decision, which would most likely be wrong as well, so I contacted the law firm Suomen Potilasvahinkoapu and asked them to take on the case. In Finland, legal costs like these are usually covered by home insurance, but to our surprise it turned out that ours did not include legal expenses cover. This was because, while living in Barcelona, we had stripped everything non-essential out of our home insurance, and after moving back we had forgotten to restore it.
However, the firm’s managing director, Joni Siikavirta, considered Saimi’s case so significant that he promised they would handle it at a steep discount, which meant it would probably end up costing them money. For us it was still a large sum, but the advance compensation from PIC was just enough to cover it. Siikavirta also contacted our insurance company, Turva, which later told us it would cover the costs as if our home insurance had included legal expenses cover. All we had to pay was an excess of around fifteen hundred euros. It felt unbelievable that first a law firm, and then an insurance company too, would act like this, almost selflessly.
We went through Saimi’s case with the law firm, and they drew up a request for a recommendation to the Traffic Accident and Patient Injury Board (LIIPO). In practice, this is the first step towards getting a PIC decision changed. The next step would be going to court, which could turn out to be very expensive if we lost. LIIPO’s recommendations are not binding, but apparently PIC usually follows them.
Appeals take time, and by the time the recommendation finally came, Saimi had already passed away. According to LIIPO, the permanent consequences of the patient injury could have been assessed earlier, and PIC made a new decision in line with that view. The level of compensation, however, was set as low as possible, on the grounds that the brain damage might have occurred, at least to some extent, before the medical error. On top of that, only a small part of the compensation was actually paid out. As it is meant to compensate the injured person, the amount payable was calculated only for the period between PIC’s previous decision and Saimi’s death. By delaying its decision, PIC avoided paying most of the compensation, and Saimi’s rights were flagrantly trampled on.
It is likely that a large share of people who suffer patient injuries do not receive the compensation they are entitled to, at least not in full. Many surely lack the strength, time, know-how or money to appeal decisions and take on an entire organisation and its army of experts. Even when someone does fight back successfully, the appeal process drags on, and in the meantime they have no access to the compensation that is supposed to make up for the harm they have suffered. On the contrary, the process drains a great deal of strength, time and money, none of which will ever be compensated. And since PIC cannot face any sanctions for how it acts – not even for decisions that are outright wrong – its strategy always wins.
In the autumn, Saimi had more health problems than before, and we were back at the hospital more often, although we didn’t have to spend any longer stretches on an inpatient ward. In October, Saimi suddenly went pale and her breathing became wheezy, so we set off for the emergency department. There she was given medicine to open up her airways, which quickly made her feel better. She still had to stay overnight for observation, and this time a bed was found for her on ward Star (Tähti). We were only on Star for about a day, but the way the ward was run seemed strange and chaotic. For example, we constantly had to ask for Saimi’s medication, and even medicines scheduled for the same time were brought one by one, often at the wrong times. Tests showed that Saimi had pneumonia, but fortunately we were able to go home for her to recover, and she was only off daycare for a few days. Later in the autumn, her haemoglobin levels, among other things, were low, and we started giving her EPO injections again. These were meant to make up for her own poor red blood cell production, caused by her kidney failure.
Several of Saimi’s care workers had told us about the Isoniitty group home, located a few kilometres from where we lived, which offered round-the-clock respite care for children with severe disabilities, among others. Many of them had done cover shifts there, and in fact Helena, Saimi’s first care worker from Tunne Hoiva, had worked there as her main job, although she had since retired. The city’s disability services told us on several occasions that Saimi could also spend short periods there.
In October, we went to have a look at the group home, and a member of staff showed us around and told us how the unit worked. Even though it was an institution, it felt fairly homely. At the heart of it was a large living room, opening onto a spacious kitchen and dining area. A corridor led off from the living room to the children’s rooms. The building also had a separate playroom and a bathing room with, among other things, a big bathtub. As I recall, there were places for seven children, each with their own room and bathroom. A few children lived there permanently, but most came for short stays.
The group home seemed to be a nice place, and we thought Saimi would enjoy it there, as she usually did when she had good company. The staff were trained practical nurses, so they should have the basic skills. Besides, now that Saimi no longer had a CVC, there were fewer demanding care tasks that required special training. However, we did have doubts because they had no experience with stomas, but we thought the practical nurses would quickly pick up what was needed, if we just showed them. What worried us most was that there was only one member of staff on duty at night. As a solution, though, it was suggested that Saimi could have her own carer at night, at least to begin with.
We decided to see how Saimi would take to it, and arranged two trial stays of two nights each, one at the end of November and one in mid-December. During the first stay I was on a work trip to Australia for just over a week, so at home Saimi also had a carer almost round the clock to help Elli. The stays at the group home were scheduled for weekdays so that Saimi’s routine would change as little as possible. During the day she was at daycare, and Jana did the daycare runs as usual. In the afternoon, Jana also stayed on at the group home for a while, although I think the staff nudged her to leave, since looking after Saimi there was their job. In the evening, Elli and Aimi went to say hello to Saimi, and I joined them on the second trial stay. Saimi spent the rest of the evening and the night with her new carers and the other children. They would all gather in the living room to watch TV or just spend time together, and after an evening snack a carer took Saimi to her room and put her to bed. Before going to bed ourselves, we would call the group home to hear how Saimi’s evening had gone.
Saimi usually got on well with most people – although not with everyone – but it seemed she didn’t like being at the group home. For example, when we were about to leave, she would start crying, and once we had soothed her, at best she would sit sulking in a carer’s arms. I found it really hard to leave her and go home. We thought it was because the carers were still strangers to her, and that she would come to enjoy their company. However, I don’t think Saimi ever really took to the place. Then again, she only stayed there a handful of times, with long gaps in between. After December, we arranged a three-night stay for the end of January and a four-night stay for the end of March. Looking back, our decision to try the group home feels wrong, and I feel bad about it. On the other hand, we couldn’t have known in advance how Saimi would react, and I believe we would eventually have stopped the stays if she hadn’t settled in there.
After the CVC was removed, several new care workers had joined Saimi’s night care team, since a registered nurse’s qualification was no longer necessarily required. Ave still carried on, but she had shifts less often than before, and Titta had only now and then. One of the new practical nurses, Anni, became more permanent. She was pleasant and meticulous, and took excellent care of Saimi. There were also a couple of good care workers who came more occasionally.
On the other hand, neither Saimi nor I liked a few of the care workers, and I felt a little uncomfortable having them in our flat at night. They didn’t know how to handle the stoma either. One night, for example, the separate ostomy bag had leaked, probably because it hadn’t been closed properly, and the care worker had decided to change the baseplate attached to Saimi’s skin. However, she didn’t know how to do it, so the baseplate kept coming off, and there was poo everywhere. With another care worker, the stoma kept leaking for some reason, so Saimi had to be cleaned up and her bedding changed several times a night. The difference in skill compared with Ave, for instance, was huge. When she was on shift, the stoma leaked less often in the first place, and when needed she changed the baseplate incredibly quickly and so smoothly that Saimi often didn’t even wake up.
One older woman seemed to be a fairly good worker, but she somehow came across as sad from the start, and I think she had some kind of personal problems. She was supposed to be one of the regular night care workers, but she often cancelled shifts, usually at the very last minute. When the daycare was closed for the Christmas holidays and Saimi was at home during the day, the woman had been booked for five night shifts in one week. Elli and I were very tired at the time and badly needed rest. The woman cancelled the night shifts one by one, each time on the day she was due to come to work. Tunne Hoiva did their best to find cover. Sometimes a familiar care worker was able to step in, though they might start the shift a good deal late. On some occasions, however, we got a complete stranger who had to be shown what to do. Saimi wasn’t pleased either when a stranger was looking after her.
After she had cancelled several shifts in a row, we told Tunne Hoiva that we no longer wanted her to come to us at all, and that we would rather go without a care worker, as long as we knew in advance. The constant uncertainty and having some random person turn up to spend the night in our flat mostly just caused stress and upset for everyone.
In late autumn, other changes and hiccups in daily life were probably wearing us down too. As the need for care help had grown, we had new care workers through Tunne Hoiva more often, which caused some stress, at least for me. In December, Jana left for the Philippines for a month, as she hadn’t taken any summer holiday at all, and stand-ins took over as Saimi’s assistants. This time they were easier to find than before. Kosi, a familiar face by now, was able to fill in, and a second good assistant was found as well. The daycare runs went without a hitch, but otherwise things didn’t always go as smoothly as before. Because Jana had been Saimi’s assistant for a long time, mornings and afternoons with her ran like clockwork, and everything got done without us having to think about it or give instructions. For the stand-ins, of course, many things were new, and finding a rhythm with both Saimi and us always took time. So it wasn’t that there was anything wrong with them, but rather the friction the changes caused and the extra work they added to our everyday lives.
Towards the end of the year, we went to the emergency department again, because Saimi seemed unwell and her arm also appeared to be hurting. At the hospital it turned out that she might have a small hairline fracture in her upper arm. This was surprising, as nothing had happened that could have been expected to injure her arm. After tests, the doctors concluded that Saimi’s bones were considerably more fragile than normal, and her supporting muscles weaker, which meant she could get injured more easily than healthy children. That made sense, but we hadn’t been aware of it before, and I don’t think Saimi’s doctors had thought about it either. Fortunately, the injury to her upper arm turned out to be fairly minor, and it healed once we were careful with the arm and kept it in a sling for a couple of weeks. It didn’t seem to bother Saimi for long either, although it was a pity that the injury and the sling limited what she could do.
At the beginning of January, I went on parental leave to look after Aimi, and Elli went back to work. My expectations of peaceful times as a stay-at-home dad soon collided with reality. Our daily life was constantly being interrupted, and most weeks didn’t go as planned at all. Until the previous autumn, we had been lucky enough to enjoy a relatively long happy stretch, when Saimi had been stable and well, and unexpected trips to hospital had been rare, if they happened at all. Now Saimi was more often unwell, and we were in and out of hospital. On top of that, tests and hospital appointments were once again more frequent than before. A few times we also kept Saimi at home as a precaution when a stomach bug had been going round the daycare, so that she wouldn’t catch it. It felt as though daily life was constantly shifting in unpredictable ways.
The unexpected hospital trips were largely due to cold viruses and her kidney failure, or simply a body worn down by her underlying conditions. The visits usually followed the same pattern. We would notice that Saimi was pale and seemed listless, or had a fever, so we set off for the emergency department at the New Children’s Hospital. Even when the emergency department was busy, Saimi was often seen fairly quickly, because her many conditions made the situation more serious than usual. We had been there so often, though, that we knew when the peak times were, and tried to get there before them whenever we could. The initial examinations typically took several hours, after which we moved to an inpatient ward. Often, for example, her haemoglobin was very low, and Saimi was given a blood transfusion, which made her feel better. After a day or two we were able to go home and get back to a more normal routine.
On one occasion at the emergency department, the tests revealed that Saimi’s potassium levels were also very high. We were puzzled, and at some point Elli realised it must be at least partly down to changes in her diet. Saimi drank a great deal of mineral water, and plenty of salt was added to it. On the dietitian’s instructions, this had earlier been switched from ordinary table salt to mineral salt, a low-sodium salt that contains a lot of potassium. The switch had been made for other reasons, and the dietitian hadn’t thought about Saimi getting too much potassium.
I told the nurse in the emergency department about the mineral salt and asked to see a doctor. When I followed up later, I was told the doctor was still trying to work out what could be causing the high potassium levels. It was a struggle to get anyone to listen to me, but in the end I got my message through. In a way it was lucky that we had come to the emergency department for something else, and that the potassium problem was spotted almost in passing, which meant it could be put right. As I understand it, high potassium can cause serious heart problems, for example, and Saimi did have an ECG, but fortunately everything was fine. Later the dietitian sincerely apologised for the mistake, and mineral salt was no longer used.
We had heard that at Leppävaara swimming hall in Espoo, disabled individuals can book an accessible changing room for private use, and early in the year we went swimming there as a whole family. In addition to the changing room, we had our own private shower area and even a sauna. I was stunned! We washed, put on our swimsuits and went to the pool area. The swimming hall was large, with pools for all kinds of needs and purposes: lane swimming, aqua jogging, a so-called therapy pool, and separate pools for children and for toddlers or babies. There was no question which pool to choose, and we headed straight for one of the two whirlpools. We all lounged in the warm, bubbling water. Elli played with Aimi, and I floated Saimi on her back, resting on my hands. Every now and then, when there was nobody else in the pool, we did a few careful five-jumps.
As I recall, use of the whirlpool was limited to fifteen minutes, but Saimi and I must have spent about an hour and a half in it. Now and then Elli and Aimi went off to the baby pool and to warm up. After our splashing about, we went back to our changing room, and I took Saimi into the sauna. We had been in the sauna with a shower chair at Jaatinen’s swimming sessions, but this sauna was built so that we could both sit on the fairly low benches. I settled Saimi comfortably next to me, and we recited the sauna rhyme we knew from Ravut: “Water, water, here we go, and the stove says: shhhhh shhhhh”, throwing water on the stove during the hissing at the end. Saimi laughed, and so did I. We threw a few more gentle rounds of water on the stove, reciting the rhyme each time, before going to wash and get dressed. During the spring term, we missed several of Jaatinen’s swimming sessions because of illness, and so a few weeks later we headed back to Leppävaara swimming hall. That time, Saimi and I spent even longer in the whirlpool and the sauna than before.
Since Saimi’s little sister enjoyed being in the water too, we were already making big plans for the coming summer holiday: the whole family would go to Imatra Spa for a week. We asked Jana whether she would like to join us for a few days. We would of course pay for her travel, accommodation and meals. She would work about six hours a day, looking after Saimi while we all did things together, like going swimming or having dinner in a restaurant. The rest of the time she could spend however she liked. Jana replied straight away that she would love to come. We booked the same kind of cottage we had stayed in the time before, and for Jana we reserved her own hotel room in the spa building. It was February, but we were already eagerly looking forward to the summer holiday.