Hazel had another appointment with a Orthopedic Surgeon about her sprengles deformity this week. The Dr. was so nice and we learned so much. I knew that Klippel- feil syndrome was rare, but I did not know that sprengles deformity was even more rare. I'm assuming that is why her first Pediatrician didn't catch it. At Hazel's 9 month visit, the Dr. asked if he could bring some of his colleagues in to look at it. In my head, I became a mama bear ready to charge with my arms up like some freak monkey screaming "My daughters not a science show!" (Go ahead... take a moment to visualize it) But, I snapped out of it and I'm beyond happy that Hazel can help Doctors identify it sooner on other babes.
It looks as if we are going to go ahead and plan on Hazel having surgery on her shoulder when she is three years old. The Orthopedic Surgeon let us know that even after surgery her shoulder will never look like her other one or have 100 percent range of movement. But, it will help her and if we wait too long to do surgery the results are not as great and there is a bigger chance of nerve damage. Hazel is also starting Physical Therapy in a couple weeks! Can't wait to see improvements with her neck and shoulder movements.
I looked backed through Hazel's newborn pics and I could definitely tell a difference in her shoulders. Here are some pictures to give an idea of what sprengels deformity is. Basically, her left scapula did not descend when she was a fetus and she has an extra bone or something pushing it up. We will find up more on her actual case when she gets an MRI.
Scapula descended or not descended she is still one beautiful babe!