Does your daughter who had surgery have an ACM 1? Duke University was doing tests years ago, and probably still are, to see if there is a genetic link to ACMs.
I had an ACM 1. I won't go into all of the details here, but feel free to e-mail me if you are interested. Anyway, after several years of a variety of treatments, I finally had to have surgery in 2001 due to blacking out. I was 33 yrs. old and the mother of two small children. Then, in 2004, I had to have a second surgery for a VP shunt insertion. Though neither was without complications, at the age of almost 41, I am doing GREAT and even had my third baby in between the two surgeries.
Please feel free to e-mail me. My story is somewhat different since I dealt with the surgeries as an adult, but I may be able to provide some input.