"My Story…" Monday: Brittle Bone Disease?


(If you missed the beginning of this story, you can find parts 1-3 here:

I was getting used to having to tell the story of how C. got hurt. It never got easier, but it almost became routine. I think the biggest saving grace for me through all of that was the fact that I had SO many people who actually knew me and not one of them doubted that it was just a horrible accident. If my husband or my family or my in-laws had ever suspected that I would intentionally harm my child, that probably would have just done me in. But they did not.
A different doctor came back in the room a couple of hours later. I still wasn’t really sure why we were still stuck there but, because I was the one under investigation, I didn’t feel it was my place to question. This new doctor told us:
If we are to accept the story you’ve given us, Mrs. S, and, at this time, we haven’t found evidence to the contrary, then we have to find out why your daughter was injured falling such a short distance. We need to conduct further testing. We will be doing a full-body scan to look for any signs of previous breaks or injuries that were perhaps not reported. We also want to run some bone density tests to see if C. has brittle bone disease- that would help explain why her leg would break more easily.”
And, without another word, she left.
We were shocked.
I fully understood that they wanted to this whole body x-ray scan because they still weren’t convinced that I hadn’t hurt this baby before. They were still looking for evidence that she was the victim of abuse and this was a good way of checking for past injuries. I didn’t like the idea of all that radiation exposure, but I was also pretty confident that nothing was going to turn up. I, of course, knew I had never hurt our baby girl, and I was quite sure I would have known if she had somehow gotten hurt previously.
But…
Brittle bone disease???
We were silent for a long time. Then my husband spoke,
“Wouldn’t they have noticed something earlier? During all those months in the NICU? At all those check-ups with Developmental Pediatrics?”
“I don’t know…” I said quietly.
“That would change her whole life… I can’t imagine.” He hung his head.
We had several more hours of trying to entertain our son and rocking our awkward, casted baby daughter. And worrying.
Yet another doctor walked in. He was there to explain the risks of the procedures and to tell us that C. would be sedated and intubated for the tests… and also that the tests would be on different days, meaning she would be put to sleep and put on a ventilator TWICE.
I burst into tears.
You may think that it would be easier for parents of a preemie who had spent weeks or months on the ventilator to hear that she would need to be intubated… after all, we’d been through all this before.
It is not.
Preemie parents spend SO long waiting for our babies to breathe on their own. Once they are finally weaned from the vent, it is cause for celebration. And also fear… we worry, unendingly at first, that any day could be the day she has to be re-intubated. No one wants to have to go back there. We were so afraid that she wouldn’t “remember” how to breathe on her own…
The full-body scan was to be that evening. Long after radiology was closed for the night, our little girl was wheeled down there. Our son explored the toys of the waiting room while I flipped listlessly through a Highlights magazine from 1994…
When it was over, my husband headed out to stay with our son. I hunkered down to stay with our baby girl.
It was a long, sleepless night.
One of the doctors came back in the morning, her face set in a stern line.
“Mr. and Mrs. S… it looks like the humerus was chipped awhile back and has since healed. Are you able to tell us what caused that?”
We had no idea.
to be cont.
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“My Story…” Monday: Brittle Bone Disease?


(If you missed the beginning of this story, you can find parts 1-3 here:

I was getting used to having to tell the story of how C. got hurt. It never got easier, but it almost became routine. I think the biggest saving grace for me through all of that was the fact that I had SO many people who actually knew me and not one of them doubted that it was just a horrible accident. If my husband or my family or my in-laws had ever suspected that I would intentionally harm my child, that probably would have just done me in. But they did not.
A different doctor came back in the room a couple of hours later. I still wasn’t really sure why we were still stuck there but, because I was the one under investigation, I didn’t feel it was my place to question. This new doctor told us:
If we are to accept the story you’ve given us, Mrs. S, and, at this time, we haven’t found evidence to the contrary, then we have to find out why your daughter was injured falling such a short distance. We need to conduct further testing. We will be doing a full-body scan to look for any signs of previous breaks or injuries that were perhaps not reported. We also want to run some bone density tests to see if C. has brittle bone disease- that would help explain why her leg would break more easily.”
And, without another word, she left.
We were shocked.
I fully understood that they wanted to this whole body x-ray scan because they still weren’t convinced that I hadn’t hurt this baby before. They were still looking for evidence that she was the victim of abuse and this was a good way of checking for past injuries. I didn’t like the idea of all that radiation exposure, but I was also pretty confident that nothing was going to turn up. I, of course, knew I had never hurt our baby girl, and I was quite sure I would have known if she had somehow gotten hurt previously.
But…
Brittle bone disease???
We were silent for a long time. Then my husband spoke,
“Wouldn’t they have noticed something earlier? During all those months in the NICU? At all those check-ups with Developmental Pediatrics?”
“I don’t know…” I said quietly.
“That would change her whole life… I can’t imagine.” He hung his head.
We had several more hours of trying to entertain our son and rocking our awkward, casted baby daughter. And worrying.
Yet another doctor walked in. He was there to explain the risks of the procedures and to tell us that C. would be sedated and intubated for the tests… and also that the tests would be on different days, meaning she would be put to sleep and put on a ventilator TWICE.
I burst into tears.
You may think that it would be easier for parents of a preemie who had spent weeks or months on the ventilator to hear that she would need to be intubated… after all, we’d been through all this before.
It is not.
Preemie parents spend SO long waiting for our babies to breathe on their own. Once they are finally weaned from the vent, it is cause for celebration. And also fear… we worry, unendingly at first, that any day could be the day she has to be re-intubated. No one wants to have to go back there. We were so afraid that she wouldn’t “remember” how to breathe on her own…
The full-body scan was to be that evening. Long after radiology was closed for the night, our little girl was wheeled down there. Our son explored the toys of the waiting room while I flipped listlessly through a Highlights magazine from 1994…
When it was over, my husband headed out to stay with our son. I hunkered down to stay with our baby girl.
It was a long, sleepless night.
One of the doctors came back in the morning, her face set in a stern line.
“Mr. and Mrs. S… it looks like the humerus was chipped awhile back and has since healed. Are you able to tell us what caused that?”
We had no idea.
to be cont.
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