In Norway, one of the most famous court cases is called the Rødseth-case. In 1981 a 19-year-old father was accused of child abuse and causing his baby girl’s death. He was sentenced to 2,5 years in prison because his five months old daughter had bruises and a fractured leg. The Supreme Court reduced the sentence to one year and nine months. But after he was released, he claimed he was forced to confess and that his baby was probably suffering from a rare bone condition. He got a lot of support from different people, including one of the most famous female actors in Norway (Wenche Foss). After a change in the criminal law, his case was reopened. Eventually Sveinung Rødseth was completely acquitted, 19 years after he was sentenced to prison for killing his baby girl Therese.

This case was of course for many years a big thing in the Norwegian OI-organization (NFOI), that was established in 1979. But since I was only a toddler when this happened, I don’t really know how the Board was dealing with it at the time. But a feeling got stuck in me, that there is always a (higher) risk that parents of children with OI can be wrongly accused of child abuse.

And then many years later I had a new epiphany. At the scientific OI-conference in Ghent in 2008 I was listening to a radiologist talking about how to differentiate OI and child abuse. And before this, I didn’t really give much thought to the other perspective. But she said it loud and clear: “Don’t forget that children with OI can also be abused!” This really stuck with me.

Since 2001 had been the chair of the Norwegian OI-organization. And I must admit, I was really in doubt of how to handle cases where parents contacted the organization for assistance, after being accused of child abuse. How deeply should the organization get involved? Which side should we support? Which doctors should we refer to? Should we provide information about the process or do more? I think many Board members of OI-organizations around the world have struggled with the same questions during the years.

One thing NFOI did was to contact the professional organization of the pediatric radiologist. Together we developed a course about OI and how to differentiate OI from child abuse. I have no idea if it prevented any court cases, but at least it’s something concrete that the organization can help with.

Earlier this year, we were contacted by Dr Gerard Pals from the Netherlands. He was worried that because of deprecated information about OI and genetics at the organizations’ webpages (incl. OIFE), we could risk that children who had OI didn’t get a correct diagnosis. This could lead to the child being taken from the parents. He encouraged us to create more awareness about the topic and perhaps to educate both professionals and OI-organizations what we should look for and think about when we face situations like this. He also offered to help with updating our webpages.

We also thought it would be good to shed light on the topic of child abuse and OI from different perspectives, which is why we in this magazine included an interview with a geneticist, a parent who was accused of child abuse and two radiologists.

Edition 3-2022 also includes two articles about how to include the voice of children with OI in treatment decisions and in research and development. The right to be heard – also known as children’s participation or voice of the child – is a key child rights principle outlined in article 12 and other articles of the United Nations Convention on the Rights of the Child (CRC). Unfortunately asking the children about their opinion is too often forgotten, even if it’s a very important human right.

I hope you enjoy the magazine and share it with colleagues and friends who might be interested!

Kind greetings
Ingunn Westerheim – OIFE president