Stories From the OI Community: Sharlene's Story

Posted on October 01, 2006 at 08:51 AM

This story just came in last night from sharlene whose daughter has OI. Here are her words:

My daughter was born two months prematurely by a Caesarean delivery and she was breech. Her apgar score was zero, dead, a normal apgar score ranges between seven and ten. She made a remarkable turn around and life continued.

At thirteen months when she started to walk, she fell and broke her femur. There was talk of child abuse. She spent two weeks in the hospital in traction, then was put in a hip spika cast, which goes up the chest, down the affected leg, and half way down the other leg, with a bar to help carry her, for those of you who don't know what that is. That stayed on for two months, then once out of that we were told to keep her still for several weeks. But what they have now found out is that you should have not done that. Now a child becomes weight bearing on the fracture as soon as possible. So with our daughter, before doctors knew this, it was a terrible cycle of fracture, traction, casting, and immobility. She fractured the other femur and it was back to the hospital.

This time no one would listen to me, as more people suspected abuse. The tincture of benzoin which is rubbed on before casting worked well the first time. But the second time it caused a severe reaction. The doctors kept telling me things were normal, they were annoyed with me since they suspected child abuse.

The family doctor came in and told them it was probably an allergic reaction, so they uncovered her legs, and her heals were in terrible shape. Now the hospital was concerned about a law suit, and I was so disgusted that I wanted her moved immediately and taken to another hospital. But our doctor talked to us and told us we would do more harm by moving her. Then a group of doctors reviewed things and agreed it must be OI. Well, we would later, after the femur healed, take our daughter to a Boston hospital, and they told us to go home, of course she has OI.

Years later we would find out which doctor expected child abuse. And he was covering for our regular doctor on the weekend when our daughter hurt her leg, we were not sure what was wrong, as she was braced at the time. But this doctor insisted on taking the brace off, where our regular doctor would not do that. I took it off very carefully, but the doctor called me outside the room to look at the x-ray, as he could not find anything wrong. While I was out there, the nurse put the brace back on and our daughter screamed. Next week, when our regular doctor took an x-ray of the leg, he found she had a complete fracture. She had a "green stick" fracture, but the force of putting the brace on turned it into a complete fracture. We had a few tough years.

Having OI and entering shcool was a problem as the small town we lived in had never seen a child with any disability, especially OI. But she attended grade school with an aide, who followed her to middle school. We then moved out of state and she enrolled in a larger high school, which had seen many different health problems, so her OI was no big deal there, and she went to school like a "normal" child.

For those who don't know medically what to look for, you would not know my daughter has OI. She is of the milder group, though all her fractures have been to the larger bones. One leg is a bit shorter, where all but one fracture have happened, so she needs to use a lift. That was tough during teen years. If she does not wear the lift, she will have back problems. She exercises intensly, but now has some problems with muscles. Collogen, which makes the bones strong, is also in other parts of the body, so when you work one area, another area may become affected.

So I hope this might help someone, or inform someone. And I hope the blogathon goes well. And for all you OI affected people, if you have not attended an OI Conference, go to the next one in Crystal City, Virginia, which is minutes away from Washington, D.C. and the date is August 1 - 3, 2008.

Thank your Sharlene for sharing your story.

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