Our little Claireese recognized on Wishbone Day

Baby girl diagnosed with rare brittle bone condition - Osteogenesis Imperfecta

Claireese Anna-Marie Bourque

Claireese Anna-Marie Bourque

By Kyra Blackburn

On October 21, 2010, we (myself and Doug Bourque) were blessed with a beautiful baby girl we named Claireese Anna-Marie.

Only a short time after bringing her home from the hospital, we were forced to head back in due to a femur fracture which occurred while changing her diaper. The hospital admitted us, interrogated us, and called child services on us.

It was soon determined and assumed that she had been abused. Blood work and x-rays were ordered, these resulted in her being exposed to 97 films of radiation and a broken arm from being pinned down and tortured.

Numerous tests were run on Claireese and everything came back normal.  Claireese had approximately 12 fractures show up on x-ray.

RCMP escorted Doug and I to the police station where we were both harshly interrogated. After this we had to be supervised while we cared for our daughter until everything was sorted out.

During our time of supervision we were dragged through an unbelievable process. We were forced to attended appointments at the Suspected Child Abuse and Neglect Clinic (SCAN), and we were forced to continue to have her x-rayed, looking for more signs of abuse or neglect.

After a week in the hospital all the remaining tests came back negative. We were finally able to go home, but only under the agreement with Child Services, that family would stay with us and supervise at all times.

We were then forced to open up our home to the RCMP and Social Services on a regular basis to allow them to continue their investigations and interview our family, including our three-year-old son.

All of this was unwillingly with the threat that if we did not cooperate the children would both be removed immediately.  I was not even allowed to breast feed Claireese behind a closed door because this meant I would be left with her unsupervised.

Child services informed us many times that the children should have been taken away at this point, by protocol.

Meanwhile, Claireese’s sclera was so dark it looked like she had no white of her eyes, just pupils.

My mom did research on unexplained fractures in newborns and came up with a condition called ‘Osteogenesis Imperfecta’ (OI).  Through her research she learned that a key sign of this condition was blue sclera and unexplained fractures.

When bringing this to the attention of the hospital and the SCAN clinic, the pediatrician reviewed our findings and denied us testing because she had never heard of OI, and the odds of one in 50,000 were very unlikely.

It took weeks of us proving to a social worker, and the RCMP, that we were good parents, and that something was wrong with our child.

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It was hard; we wanted to celebrate the birth of our daughter, but instead avoided all confrontation with extended family and friends because we had no explanation as to why our daughter was in a full body harness.

The hospital put in their report that “All tests have been run that would rule out abuse”, and everything had come back negative, therefore they wanted to close the case as an abused child.

Our social worker had spent a lot of time getting to know us, and eventully started seeing that there was something wrong with our daughter.  She was soon convinced that this unknown problem could be that of a patient with OI.  She then helped us to get the referral for testing down at BC Children’s Hospital, against our pediatrician’s wishes.

BC Children’s Hospital clinically diagnosed Claireese at her appointment, clearing us from Social Services and charges from the RCMP.

That day we learned that our baby girl did have the very rare brittle bone condition Osteogenesis Imperfecta. We were lost. Nobody knew what OI was, and our little girl had it.

Nobody could answer our questions, nobody we knew had it, and we were even finding ourselves explaining it to our local specialists while there looking for answers.

Reading the diagnosis report from BC Children’s Hospital we found it contained information that Claireese would never walk because her bone density was too low, they suggested that if she stood on her legs they would crumble. They even put in a report that was mailed out to us that they could not rule out mild Osteogenesis Imperfecta but because of the amount of fractures she had already retained it was most likely a more severe form of OI that could even be lethal.

Claireese now attends Montreal Shiners Hospital in Quebec where she sees some of the world leading OI specialists, and has received a proper diagnose of Moderate Osteogenesis Imperfefcta (TYPE 4).

Claireese has had close to 20 fractures to date but if you know her, you know nothing stops or slows down this little girl

We know that all of this could have been prevented if people including medical professionals were more aware of OI. We believe that it is nobody’s fault what we went through, except that the condition is unknown to many. We hope that by spreading awareness about OI will prevent the next family from enduring the problems we had to face. And most of all, after reading our story, we hope that you remember to wear yellow each May the 6th for WISHBONE DAY, a day for raising awareness for Osteogenesis Imperfecta.           A day each year to recognise our little Claireese, and other children with OI.

Because awareness does make a difference.

You can find out more about Osteogenesis Imperfecta and Wishbone Day by going to: www.oif.org or www.wishboneday.com

Osteogenesis Imperfecta, or OI, is a genetic condition that causes bones to break easily. OI is also known as “Brittle Bones”. A person born with OI will have the OI throughout their lifetime. A person can have anywhere from 1 upwards to 300 plus broken bones in a lifetime. People with Osteogenesis Imperfecta can also expect to have other problems such as deformed bones, shorter stature, bone pain, and tooth decay also known as Dentinogenesis Imperfecta.

Wishbone Day is an international community awareness effort to raise awareness of Osteogenesis Imperfecta and to clear assumptions about what OI is and what OI is not.

The term Wishbone Day came from the idea that a “wishbone” is the only bone that a person can break that will not hurt them.

Yellow was the colour chosen to represent Wishbone Day. Please wear yellow each year on May 6, and show your support for Claireese and others that live life with Osteogenesis Imperfecta.