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Rotation Option

Hi there! My daugter, Sami, has PFFD...or CFD, as I was told yesterday. I guess it's more "politically correct." Sami is 7 1/2 months old and a complete JOY!! We went to see Dr. Paley yesterday for the 1st time. It was the first time we even saw an x-ray of her. Very interesting. Dr. Paley diagnosed her as "type 3." He said he "could" lengthen, but painted a very bleak future. He was much more animated when he spoke of the rotation. As parents, you know...we want the BEST for Sami...we are going to teach her to be strong, proud, smart, confident...know she's beautiful...just as we would if she didn't have this...PFFD. She's a WHOLE you & your kids are...not just a my question (I'll get off my soap box, I'm actually prepping myself for when I have to talk to friends/family!!)

Question...who has gone thru a rotation and what has it been like?

Thank you!!


We have two daughters Erin (6 yrs old) and Allison (2 years old). Allison has bialateral PFFD. We saw Dr. Herzenberg (Dr. Paley's colleague) and Dr. Paley actually stopped in to confer, when our daughter was 7/12 months and then againat 15 months. We knew she was not a candidate for lengthening. She has a short femur in her left leg and delayed development in her left hip (i.e., her hip socket and femoral head). She also has some instability in her knee. On her right, she has a single bone that appears to be a tibia. She has no femur or hip socket, and no fibula. Her right foot falls at the level of her left knee.

Dr. Herzenberg and our doctor in Cincinnati told us that the Van Ness rotation would be something to consider for Allison in the future. We'll go back to Baltimore in June. You will probably read a lot of controversial things about Van Ness. We are still considering the best thing for Allison.

Our goal is to help Allison maximize her walking ability -- the aesthetic appearance of her legs is less of a concern. We are open to surgery, if that makes the most sense, but we hope to learn more about non-surgical treatments. We are hoping to find more information that compares Van Ness with other, non-surgical treatment.

We have read about children that have a special prosthesis utilizing their foot and ankle to help act like a knee. It was originally designed by Dr. Mosely, in California. There is a women who has a website connected to the pffd website that talks about it. We are hoping to learn more about this possibility before making a decision about Van Ness or other surgeries.

Allison got an extension prosthesis at 1 yrs. old and by 18months was walking independently. She gets around well by herself now and hasn't had problems with her prosthesis. We're still doing lots of research and trying to find out information from parents of children that have had the Van Ness and other options.

Like you, we want what is best for Allison. Your daughter will amaze you. Allison has always been an extremely happy child and lots of fun. She is not phased by the challenges she has faced. I know the day will come when she'll ask questions about why her legs are different from other people. And we'll deal with those questions. As you said, she is WHOLE person and much more than her legs. She is well loved and treated like any other child by her sister and the many kids we have in our neighborhood.