– I’m disappointed, and I don’t feel heard. Inger Therese Hoff talks about the plans for new hospitals in Oslo. She and her husband Jon Harald Hoff are back at Rikshospitalet in Oslo. – Sonja spent almost her whole life here. The daughter was six months old when she got cancer. And died three weeks before she was supposed to turn three. No room to play Father Jon Harald shows a picture on his mobile phone. In autumn 2019, the daughter spent 12 weeks in isolation. The window in the room was too high up for her to see out. Even though she was sick, she wanted to play with her big brother. It had to happen on a mat on the floor. – There was no place to play. So the mat was placed where the door opens into the hospital room. In autumn 2019, Sonja spent 12 weeks in isolation after being in the intensive care unit. She was so ill that she had to be supervised every fifteen minutes, but still wanted to play. There was no place other than on a mat right by the door. Photo: Privat In autumn 2019, Sonja spent 12 weeks in isolation after being in the intensive care unit. She was so ill that she had to be supervised every fifteen minutes, but still wanted to play. There was no place other than on a mat right by the door. Photo: Privat Every time doctors and nurses came to check how she was doing, she had to stop playing and move. Sonja’s short life gave her parents a new life task: to ensure a good environment for all children in hospital. – We have had such a good time here that we have decided that this is what we will do for the rest of our lives. Quite simply, says Inger Therese. Withdrawal The life task has led to Sonja Victoria’s foundation, a journal, and regular conferences. Again and again they have told. And been noticed. So much so that Oslo University Hospital (OUS) wanted the foundation to join the steering group for the children’s and youth hospital section. Over 100 representatives from many organizations were present. The foundation saw an opportunity to be heard and be able to influence. It didn’t turn out that way. The experience is that everything was decided before the organizations were even invited in. Their input was not taken further. Inger Therese Hoff cannot vouch for the result. – I resign to speak out. And use my voice to say that what we are building now is not good enough. OUS does not wish to comment on the parents’ experiences at the hospital or in the steering group. Small rooms and roof terrace The main problem is too little space, according to the parents. They respond to several solutions. The answers to Helse Sør-Öst and the hospital can be found in italics under each point. Small playrooms and common areas. They are distributed throughout the hospital instead of gathering in one large common area. Few outdoor areas for children and young people, much has been solved by a roof terrace which the parents believe is not suitable for children. The roof garden is suitable for those who are not allowed to go outside. And there are also outdoor areas at the entrance and near the hospital. Several of the children’s rooms have a view towards the hospital. It only applies to the rooms for short stays. The rooms for longer stays have a better view. The fact that the bathroom is located in the middle of the larger rooms for children who will be staying over time prevents, for example, that more beds can be inserted so that the family can sleep together at the same height. The bathroom becomes a natural separation between the sleeping and living areas. There is room for an extra bed in the room. No permanent place is planned where the families of sick children can live. Children may have parents in the room. And it will be assessed whether some of the buildings at the current hospital can be used to house families. Jon Harald Hoff lost his daughter Sonja Victoria to cancer. Now he and his wife have via their lives to create better hospitals for children. And include children’s needs when building is planned. Photo: Jenny Dahl Bakken / news Jon Harald is clear in his speech: – The new hospital is a huge procedural error, because it is not being built for the best for the children. It is built for the best for the management of Helse Sør-Öst. The company completely disagrees with the father’s criticism. They believe the new children’s and youth center will provide a big improvement for everyone. – For the first time, a separate hospital for children and young people is now being built in Oslo. We have used the best architects and hospital planners and we have included employees and users for advice, says the company’s deputy managing director Jan Frich. Glimpse of everyday life The parents also have fond memories of Sonja’s time at the hospital. The golden moments, small glimpses of everyday life. The days the daughter was well enough for them to go for a walk. Sibling play. And the dinners. As if they were to live or die, they would eat together every day, inside the room. The felt bed one of the parents slept on they pushed into the bathroom. The stool from the shower became a chair at the small table. – We had dinner there together. And talked about the day that had been, and the day that was to come. It was important, says Jon Harald. The daughter spent months in solitary confinement. 17 square meters to live on, without the possibility of leaving the room. The fact that it was not possible to put in a bigger bed so that they could have their heads at the same height as their daughter was a burden. Photo: Privat The daughter spent months in solitary confinement. 17 square meters to live on, without the possibility of leaving the room. The fact that it was not possible to put in a bigger bed so that they could have their heads at the same height as their daughter’s was a burden. Photo: Privat More than patients The parents emphasize that their daughter received good treatment at the hospital. – Yes. We really felt that patient Sonja was well looked after. But the person and the child Sonja were not, says Inger Therese. And that is the core of the problem, they believe: The children’s needs, apart from the medical, are not the responsibility of anyone to think about. – There is no one who puts their hand in the air and says “I take responsibility for ensuring that the children’s rights are safeguarded”, says Inger Therese. Then the foundation must do it itself. Before they came to the field and asked for numbers, the hospital did not know how many children lived there over time. It was not a factor they had thought about when planning the rooms in the hospital, claims Inger Therese. Jon Harald and Inger Therese take a walk with their youngest child outside the hospital where older sister Sonja Victoria lived most of her short life. Photo: Jenny Dahl Bakken / news – Must live for something In the future too, many children will be as ill as their own daughter was. – What will those children live for? Why should they lie in the little white room and fight, when they can’t even look out the window? Jon Harald Hoff is upset. While Sonja Victoria was alive, her parents tried to take her out of the hospital as often as possible. To give her something to look forward to. So they could say that “when you’re back on your feet, we’re going back to the horses at Gaustad”. Or on a boat trip, or in a restaurant. Or – a trip home. – The things that give life some meaning, some content, he says. – Because it is a white, cold, and very grown-up world in there. That is what we offer the children, says Inger Therese Hoff. Little brother takes a nap in Sonja Victoria’s room. Most of the family’s life took place in the hospital during the years the daughter was ill. Photo: Privat Lillebror takes a nap in Sonja Victoria’s room. Most of the family’s life took place in the hospital during the years the daughter was ill. Photo: Privat Hello! Do you have any thoughts about the case you have read? Or more tips about rescue helicopters, facilitation at school, crime or mental health? Perhaps about something completely different from Greater Oslo that should be taken care of? Feel free to get in touch!
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– No one takes responsibility for the children – news Oslo and Viken – Local news, TV and radio
