How to Tell If a Child is Being Abused, or Has Brittle Bone Disease

Fans of Jodi Picoult may recall her 2009 novel, “Handle With Care,” which shot to the top of the Times bestseller list. The novel chronicled the tangled ethics around Willow, a girl with osteogensis imperfecta (OI), also known as brittle bone disease. Occurring in around one in 20,000 births, this condition is characterized by a shortage of collagen, an important connective tissue in the body. Patients with OI, which comes in a number of forms that vary in severity, are prone to broken and dislocated bones as well as bruising and scarring.

Living with OI can be frustrating; an activity as ordinary as shaking hands can result in a fracture. Most people are diagnosed in childhood as they experience frequent injuries more severe than those identified in other children, or because their parents have a family history of OI. Thanks to both physical markers and genetic testing, it’s possible to determine that a child has OI and to find out more about which form the child has through followup testing.

Unfortunately, the signs of OI closely mimic those of child abuse, and consequently, it’s not uncommon to see kids with OI taken from their families as a result of interventions by clinicians and mandated reporters like police officers and teachers. Any adult who sees a child with severe bruising, repeatedly broken limbs and other signs of serious injuries would understandably be concerned, but in this case, the consequences of reporting the situation to child services can be tragic. Rather than getting a child out of an unsafe situation, the report may result in separating a terrified child from her family.

Furthermore, the underlying medical problem may remain undiagnosed for a longer period of time.

OI campaigners want to change that with education for mandated reporters to help them learn how to discern the key differences between osteogenesis imperfecta and child abuse, and the perfect opportunity for that is OI Awareness Week, running this year between May 4th and 11th. While people are talking about OI and the lives of patients, it seems like a good idea to take action to improve the lives of patients, but thus far, organizations participating in OI Awareness seem stuck on the idea of vague “public awareness” rather than concrete action.

The same problem can be seen in settings like breast cancer awareness — with most of the population aware of breast cancer at this point, the question is not how we can provide better outreach and education to teach people that breast cancer exists, but how we can help breast cancer patients. In the case of OI, many members of the public aren’t familiar with the condition and thus some public education is a fantastic idea, but so is an education plan to prevent false child abuse accusations, as Lisa Egan, a disability campaigner with OI, recently wrote at xoJane.

She points out that: “Wishbone Day has been happening for a few years now, but Iíve never heard of any events aimed at the professionals who really need the awareness drummed into them. Iíve even suggested training for doctors and social workers to people in positions to organize such training; but Iíve been brushed off because they perceive dressing in yellow for the day to be more important…Iíd even be willing to play guinea pig for a day to help these professionals learn what osteogenesis looks like.”

Her criticisms cut to the core of a serious problem: many awareness campaigns stop short of action and change. In the case of OI, there’s a perfect opportunity for expanding the scope of OI Awareness Week to do something important for OI patients and their families. In quick training courses, mandated reporters could learn how to tell the difference between OI and child abuse, which would allow them to screen children who appear to be at risk and determine whether they should be referred to a medical specialist or child services.

When you’re looking at a child with a history of injuries and you’re concerned about the possibility of abuse, how can you tell if it’s abuse or OI? There are several physical signs you can look for:

Blue sclera. Due to the collagen deficiency associated with this condition, many OI patients have blue or grayish sclera (the “whites” of the eyes).

Reduced height. Patients with OI tend to be shorter than others in their age group.

Yellow teeth. Rather than being the result of poor dental care, the yellow teeth seen in people with OI are also the result of collagen deficiencies.

Triangular face. A distinctively triangular face structure is another common feature.

Barrel chest. OI patients tend to have a barrel-chested appearance.

A combination of these traits with a significant break or dislocation and substantial bruising could mean a child has OI. Parents may not be aware the child has the condition, in which case a diagnosis could be critically important for getting the child the right treatment and followup.

Of course, children with this condition are not immune from child abuse, and sadly the very fact that they’re prone to injury can cover up the signs of child abuse, as injuries may be attributed to innocent accidents. It’s important to still be watchful for signs of child abuse (like burns), and one way to do that is to create a safe and comfortable environment for children so they feel safe asking for help if they need it.

Related articles:

Penn State Scandal: Tougher Laws About Child Abuse Necessary

Child Abuse Happens Every Day

Why are More Children Being Hospitalized for Abuse?

Photo credit: Thomas Mueller


Elisa F.
Elisa F4 years ago

I too, read about this dreadful disease in Jodi Picoult's "Handle With Care". OI Awareness Week is a fabulous idea! Maureen L.'s suggestion of parents having a doctor's certification of their child's disease with them at all times is imperative. Blessings to all who are touched by this disease.

Angela Roquemore
Angela Roquemore4 years ago

Mary L.: What's the PKU test?

Angela Roquemore
Angela Roquemore4 years ago

Samuel L Jackson's character in UNBREAKABLE had the worst form of this disorder. Does anyone remember that movie?

Fred Hoekstra
Fred Hoekstra4 years ago

Thank you S. E. Smith, for Sharing this!

Liliana Garcia
Liliana Garcia4 years ago

Correcting typo: "I never heard of it but frequent bruises would be evident in the periods where motor milestones are worked through, etc"It occurs to me maybe mothers of children with this condition could get together and work out some kind of supportive network and grassroot movement.

Liliana Garcia
Liliana Garcia4 years ago

Leaves you with an open mouth! I never heard of it but frequent bruises would be evident in the periods where motor milestones are worded through, crawling and later walking. How come this is not checked routinely by the doctor when a toddler shows such signs. I'm baffled. Severe physical abuse generally leave their mark behaviorally, such as children looking in fear when they have made a slight mistake like dropping an object and their eye contact with the abusive parent is rarely mutual. I think too many things are being missed that could routinely point the way. Doesn't make sense that such serious condition could be confused with severe physical child abuse!

Tony C.
Tony C4 years ago

First time I have heard of this. Is there not a simple test like x-ray, MRI, Ultra sound, or blood test to detect this, so parents don't have to suffer the humility of being taken away from their sick children?

Mary L.
Mary L4 years ago

This is a disease of elimination and sadly these days parents are often one of the first things eliminated.

Until there's a cheap test administered at birth like the PKU test, it's going to be a crap shoot whether or not these kids are protected from over zealousness or abuse.

Jessica Larsen
Janne O4 years ago

I hadn't heard of OI until now, but on a general note I can say that I'm very glad I grew up in a less hysterical time. I have always been skilled at getting scrapes and bruises I have no idea how got there, and I'm very glad that I grew up in a time when it was considered normal for children to get light injuries. I was never a victim of domestic violence so I'm glad I didn't have to convince my teachers of that, like some children today do.
Come to think of it, I *still* come across bruises and marks I don't know how got there, lol. I chalk it up to dyspraxia.

Nicole W.
Nicole W4 years ago