I came across this photo this morning.
This was how a life jacket fit prior to J's surgery to correct her Sprengel's Deformity. And yes, I knew it was not safe! She wasn't on that boat for long as it was so uncomfortable. Uncomfortable for her and it was uncomfortable for the rest of us to look at her. Poor thing!
About 30 percent of children with Klippel Feil Syndrome have a sprengel's deformity. It means that one or both shoulder blades are deformed and/or elevated. Generally, range of motion is very restricted because of the elevated scapula.
We chose to have surgery to correct the deformity to improve her range of motion, but also for cosmetic reasons. Her shoulders are level, she can raise both arms straight above her head, clothes fit better and she can comfortably wear a life jacket. It's been a little over a year since this surgery. What a journey! And what a wonderful gift we were able to give her with the help of Shriner's Hospital.
I can't wait to show her this picture when she is older!