Interview with Sofie Hellström, mother of Gabriel, affected by a milder form of OI type 4

Who are you and what is your relationship to OI?

My name is Sofie Hellström, I am 31 years old and I was introduced to OI in the summer 2020 when my son was diagnosed with a milder form of type 4. Since no case is the other alike, I usually say he is a “type Gabriel”.

Tell us what happened when you got accused of child abuse?

Gabriel was diagnosed at the age of 1. Prior to that he was unfortunately misdiagnosed several times by different doctors, which led to a few untreated fractures. To fast forward to the day we were accused, it was in spring 2020. Gabriel broke his right femur while falling on grass. We sought medical attention and the doctor immediately responded that we had to go for X-ray. At that moment, with our previous experience of injuries, I asked if Gabriel could have brittle bones. The doctor answered that children cannot have such a thing as bone fragility. Thereafter the investigation started with suspected child abuse.

Gabriel was forced to go through CT scans, retinal examinations etc. Due to the facts that Gabriel had no signs or symptoms of head trauma, it seemed very odd to suggest such an intervention. What we later found out, was that they suspected the “Shaken Baby Syndrome”. A diagnosis that’s controversial and doesn’t have sufficient scientific support. This has been confirmed by the Swedish independent governmental organ SBU (Swedish Agency for Health Technology Assessment and Assessment of social services). It is a diagnosis that has been widely criticized around the world, but is still being used by many health care professionals. We were interrogated and investigated by social services and had to live with a safety person 24/7 for six weeks until Gabriel finally got his diagnosis. It is sad to say, but our family were lucky, in comparison to many others.

Do you know how common this is?

It is unfortunately very common that medical conditions, where symptoms are similar to child abuse, gets misdiagnosed. Especially within those cases where there is a spontaneous mutation. At our first visit with the OI specialists, they mentioned that most of the families with children who have spontaneous mutations, go through the same process with allegations of abuse. I have also been in contact with several families in Sweden and other countries and they confirm they have been through the same, similar or worse experiences.

You have engaged yourself in a Swedish organization for families of children with medical conditions who have been accused of child abuse?

I am engaged in an organization which helps affected families with support and knowledge about differential diagnoses. To be accused of abusing your child, is a very vulnerable situation to be in and traumatic for anyone involved. We have members who have been imprisoned, separated from their infants and thereafter released by the Supreme Court and compensated by the state due to wrongful conviction. Since the Swedish legal processes always take a very long time, the child often remains in foster care even though the parents are shown to be innocent after years of investigation. Because of time, not cause! Thus, bereaved from parents, siblings and the whole “family tree”. That is an irreparable damage that violates several human rights.

Our organization also works to make sure all children receive a good quality medical assessment. That requires that health care professionals work in a scientific way and not base their hypothesis upon the highly controversial diagnosis Shaken Baby Syndrome.

How should the OI-organizations deal with this complex topic?

Yes, the topic is very complex. However, our job is not to take sides or decide whether someone is guilty or not. It is very important that neither health care professionals nor organizations try to be the judges. Since diagnosis made by health care professionals usually become decisive in court, it is crucial that that judgement is based on science, objectiveness and correct knowledge about all differential diagnoses. It is also important that social authorities do their own objective investigation to see if there are risk factors of abuse. In our organization we have seen a lot of similarities between the cases. They are ordinary families without any reported history of violence, drugs, alcohol (risk factors of child abuse). All families have sought care on their own initiative and the children have rarely showed any symptoms of being in severe pain or had visual signs of outer trauma.

What should the organizations avoid doing?

The organizations should avoid distancing themselves from the situation. To respond by not responding should be avoided at all costs. These families are put in an extremely vulnerable situation, and the organizations should therefore work as an objective part who can support with knowledge or guide the family through the process. Having support can make a tremendous difference in the aftermath and decrease the risk for Post-traumatic Stress Syndrome.

How can we as OIFE and OI-organizations educate healthcare professionals and the wider OI-community on how to discriminate between OI and child abuse?

Again, it is not our job to “discriminate” between OI and child abuse. That is something for the legal justice system and social authorities to investigate. However, the majority of organizations know this is not an unfamiliar dilemma linked to OI or other medical conditions such as EDS, Rickets etc. Therefore, we need to make sure that more light is shed upon the conditions and especially the milder forms that is usually being misdiagnosed. We also need to learn from each case and not generalize that all children with milder forms of OI share the exact same symptoms.

Some recommendations to pass forward to health care professionals:

• Decrease the current knowledge-gap about differential diagnoses!
• Only use updated examination methods that has sufficient scientific proof. Stop putting children without signs of head trauma through unnecessary risky examinations linked to the controversial Shaken baby Syndrome.
• Stay objective! Our brains are wired in the way, that if we believe it is abuse, our brains will automatically look for any confirmation to prove that hypothesis. Being biased increases the chance of misdiagnosis. This can become the crucial factor that leads to separating children from their parents and the conviction of innocent people
• Learn from previous mistakes! Stay humble to the fact that the situation is not always black and white, and you do not always have the answers to all questions.

We need to protect children from abuse, but it is equally important to prevent them from being separated from their families on the wrong basis. It is important to remember that attachment trauma is a harmful experience that can affect the child throughout its whole life.

What is your peer advice to parents of children with OI who might end up in a situation like yours?

Get help and support from family and friends. Make sure your child gets a thorough medical assessment and reach out to support organizations.

Should we educate the pediatric radiologists?

In Norway the OI-organization did educational talks for pediatric radiologists about OI and child abuse – would you encourage other OI-organizations to do the same? Yes! The knowledge is too low and should be increased worldwide. Any educational talk for pediatricians is very much encouraged. I would also encourage widening the description of milder forms of OI. In the theory books, Gabriel doesn’t fit the general description of OI. It is therefore important to understand that milder forms of OI come in many variants with different symptoms.