Our new daily life was not quite as home-centered as we had expected, because we ended up being in hospital constantly over the following year. Often it was because Saimi was clearly unwell or had a fever, and we would set off immediately for the emergency department at the New Children’s Hospital, from where she was usually admitted to Mountain. It was always important to find out what was behind it, and even an ordinary cold could mean that Saimi needed something like extra fluids or red blood cells. In general, the balance in Saimi’s body was fragile, which called for constant close monitoring and fine-tuning of her nutrients and medication. Usually we were in hospital for a few days and, once she had recovered, we got to go home again.
Spending so much time in hospital, we inevitably caught glimpses of other families’ lives. Perhaps the most memorable was a sweet little boy’s birthday on ward Mountain. His parents apparently lived further away and were probably working, which meant they couldn’t be with their child all the time. One day the boy was toddling happily along in front of the nurse’s station with the help of a walking frame, and the nurses sang him happy birthday. His beaming smile and delighted face have stayed in my mind like a photograph.
The hospital’s one-parent rule also limited parents’ access to their children at times. Once, when Elli was in the parents’ room, she witnessed one of the two parents there being turned away from the ward. They had explained that they lived far away and had only one car, which they came to the hospital in together. The explanations made no difference. One of them had to go, and the father apparently went off to sit in the car. One day, when I was taking my bike down to the hospital’s underground car park, I watched a father playing there with his child. I assume he was waiting to swap places with the other parent up on the ward. To me, the one-parent rule felt cruel and simply stupid.
Then again, apparently not all parents wanted to be with their child in hospital. One time Elli happened to overhear a nurse calling the parent of a child on the ward to say that the child would have a night off intravenous nutrition, so they could be picked up for home leave. Of course we knew nothing about their situation, but we wondered how anyone could ever need reminding about something like that. We also heard from the nurses that some parents didn’t want to take any part in their child’s care, and would instead just sit around at the hospital waiting for the nurses to do everything. That said, I do understand that taking part in the care isn’t necessarily easy, and it can also be a question of coping and of needing rest. Being with a sick child can be very intense and draining in itself, and when a nurse is there, a parent at least gets a moment to catch their breath.
From the very beginning, the nurses stressed to us that parents should look after their child themselves as far as possible, in hospital too. Although the intention was undoubtedly good, and it was more of an encouragement than anything, at times it felt like a demand. We tried to be at the hospital with Saimi from morning to evening, either together or taking turns, and we did the care tasks as far as we were able to manage on our own. The ward nurses were of course always there to help when needed and would keep Saimi company while we went to eat, for instance. The nights, though, Elli and I usually both spent at home, at least when the ward was well staffed, a familiar nurse was on the night shift and Saimi was doing relatively well.
In March, when I was at the hospital with Saimi again, a nurse brought me the medicines drawn up ready in syringes. I still checked every medicine before giving it. The last time I had spotted a mistake was only a couple of weeks earlier, although that had been “only” a small dosing error with vitamin D. Now I looked at one of the syringes in my hand and wondered whether I had actually given it already, because it looked empty. The cap was still on, though, and on closer inspection there was a little medicine inside. The one-millilitre syringe was supposed to hold 0.15 millilitres of blood pressure medication, but apparently 0.015 millilitres had been drawn up. I was baffled and furious at the same time.
I called Saimi’s nurse over and asked her to fetch the doctor in charge of the ward to discuss it with me. As usual, what I got was an apology and the observation that this shouldn’t happen. Because nothing changed after numerous mistakes and my pointing them out, I decided to file an official complaint with the Regional State Administrative Agency. They concluded that there had been errors in the way things were done, but on the basis of the hospital’s response they saw no need for further action. As I recall, the mistakes were essentially written off as exceptions, and the reply described how things ought to be rather than focusing on how they actually are, which is typical in situations like these.
I kept wondering how on earth nobody seemed to take it seriously. This wasn’t a one-off, or me overreacting, let alone imagining things, but a serious mistake that had demonstrably happened over and over again. Nobody took any responsibility for it, and above all, nobody was held responsible. That lack of accountability was something I later came to notice is unfortunately all too often the standard way of operating in the hospital world. I believe the absence of responsibility, or perhaps more accurately of consequences, is also one of the single biggest reasons why mistakes happen and, above all, why they keep repeating, both in hospital and outside it.
After Saimi’s discharge, I applied to the City of Helsinki for the status of informal carer. My parental leave would end in April, but at least one of us had to be at home with Saimi, as she couldn’t go to a daycare, for instance. In Helsinki, the informal care system has three care level groups, which determine the allowance. At the time, the lowest level was paid around 450 euros before tax, the next a little over 800 euros and the highest about 1,800 euros. On top of the allowance, an informal carer is entitled to two days off a month in the lowest group and three in the higher ones. A day off meant either respite care arranged by the city or a service voucher, which could be used to hire a carer from an approved provider to come to the home for a total of 12 hours.
Applying for informal carer status was hard, above all because the application naturally required a detailed account of every illness, problem and care need Saimi had. If your usual tendency is to gloss things over and try to see them in at least a slightly better light, that is the one thing you should never do in an application like this. Quite the opposite, everything has to be told with brutal honesty. Even though I saw our situation entirely realistically, going through it in that kind of detail and, in a way, having to prove how bleak Saimi’s situation was, hurt.
Kirsi, the social counsellor handling Saimi’s case, understood how demanding Saimi’s care was, but told us apologetically that the city doesn’t grant the highest support group to the carer of a small child, because looking after a small child is considered to require full-time presence anyway. Comparing our situation to being with a normal child annoyed me a great deal. Whereas in Finland the parent of a one-year-old can decide for themselves whether to put their child in a daycare, we had no choice. Nor could the care and attention Saimi needed be compared in any way – nappy changes aside – to the situation of a healthy child. Caring for Saimi took so much specialist knowledge that using a babysitter to get a moment’s rest, for example, was out of the question as well. Additionally, one essential thing that drains a great deal of energy, and that I think is rarely understood, is the round-the-clock worry about your child’s condition and the knowledge that it isn’t a passing phase but a permanent situation.
Since only one of us was able to work – and even that was mainly thanks to the possibility of working remotely – we had to get the highest care allowance to manage financially. Personally, Kirsi no doubt wanted to be on our side, but she was caught in the middle herself, as the actual decision would be made by a committee, to which she presented our case. I went carefully through the city’s own descriptions of the different care level groups several times myself and concluded that on that basis there was nothing unclear about it. Saimi unambiguously belonged in the most demanding care group. In our discussions with Kirsi, I repeatedly asked the city to make some decision, any decision, as quickly as possible, so that I could then appeal against it and we could move forward. I was fairly certain the highest allowance would be granted on appeal, but I was afraid it would take too long.
The decision-making process dragged on, and I think the actual informal care agreement wasn’t drawn up until June. To my surprise, Saimi’s care level was assessed straight away as the highest, and there was no need to appeal after all. As I understood it, that was very unusual for a small child. While I was pleased that it had worked out, I couldn’t help thinking how unfair it is that the level of support depends in practice on the carer’s persistence and ability to fight for the family’s rights.