Kevin/Tiffany Clark
I have a 9 month old daughter who was also born with VATER Assoc. She has torticollis and congenital scoliosos. Right now she has approx. a 40 degree curve in her spine. She also has some fused vertabrae and an extra rib. When we took her to see a spine specialist, he said he felt that the more conservative approach would be surgury (a hemi-vertebrae excision). He said that braces were too abrupt and would be, as you have experienced, long term. She is to have a surgury within the next few months where he will remove her extra rib and use pieces of it to make a "glue" to fuse the deformed vertebrae (where the growth plates are not consistent)together. Then she will be in a body cast for 4 months. This was devestating news to us but there is a chance because of her age, that her spine could improve maybe to a 20 degree curve. I am probably just giving you information that may not apply to your daughter, but frankly I jumped at the chance to share with someone who knew what my husband and I were dealing with. I hope you are able to find some solutions.