Session Eighteen: Limb Difference
April is limb difference awareness month. Our little lady has a very rare condition called radiohumeral ( or humero-radial) synostosis. It is estimated that it affects less than 1,000 people in the United States. There really is very little medical information out there on the condition.
After our daughter was born, those first couple of days were filled with test after test, which included a litany of x-rays. It was discovered that both of her arms were fused at the elbow. With it being such a rare occurrence, the geneticist decided to use that birth defect to begin the arduous process of diagnosing our daughter's underlying type of skeletal dysplasia.
However the two (very rare) medical conditions associated with radiohumeral synostosis didn't fit her other birth defects and the blood tests confirmed that she did not have those conditions. We didn't actually discover her diagnosis until she was a year old and the geneticist informed us that she was adding a new birth defect to the condition since he was unaware of any other individual with Acampomelic Dysplasia having the rare limb condition.
Our daughter has a lot of birth defects associated with her dysplasia, so we rarely talked about the limb condition. However, as she aged, it became more of a challenge for her to adapt to a typical environment, especially at school. Imagine not being able to extend your arm to reach for things! Her elbows do not move, but she can extend through her shoulder and rotate her wrists to attempt to reach for items.
Dressing herself, especially putting on shirts and coats presents the largest challenge for our daughter. She's still only nine, so it hasn't been a priority amidst all the other things we deal with, but as she ages, it is beginning to weigh on our minds. We question what kind of independence she will be able to achieve as she enters her teen years, but for now, we are managing.
As with any kid with limb loss or difference, our girl has adapted. Like I said, there are situations that present a challenge with her fused arms, but so far, she has found a way. She even does push-ups in phys ed class! Our girl is full of determination. And that determination is contagious. Watching her achieve milestones we were told were impossible helped us as parents to put the fear away and live life to the fullest.
To all those individuals out there with a limb difference, we salute you this month and always!
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