When I was 8 months thru my pregnancy I was told by one of the doctor that my daughter will be born with PFFD. He explained to me what it was and what it consist of. From there he reffered me to an orthopaedic pediatric doctor name Frances Farley, who is the Chief of Orthopaedic Pediatric at U of M Hospital.
Kendelle was born on November 2, 2002 and her left leg was 2 cm shorter than her right leg. There wasn't very much they can do so we waited until she was 3-4 months old to see her orthopaedic doctor. From there, she explained to us the 3 options for treatment, but at that time it was to early to tell which is best for her.
On November 2003 (1 yr. old), we saw Dr. Farley again for the 3rd time to tell us more about Kendelle's situation. She showed us the x-ray that was taken right before we saw her and explained to us what we are looking at. Kendelle is missing a bone in between her hip and thigh bone which causing her to have the deficiency. At this time, her left leg was 4 cm shorter which is half of her right leg. Her doctor mentioned to us that we should start thinking about getting the Vans Nes Rotation or Amputation. So when I got home, I searched the internet about the Vans Nes Rotation procedure and for the outcome after the surgery. It gave me a lot of information about this surgery, but not too much of the outcome. I had to search for people who had this surgery and by contacting them, it was the only way to find out about the outcome. It gave me hope and peace by talking to these people. Since lengthening was not one of our option at that moment because it was too big of a difference, we decided that Vans Nes Rotation is what's best for Kendelle. The thought of having your child's foot/leg being amputated when there's nothing wrong with them was totally out of the question. So for the moment, we decided on shoe lift since it was too early to have any surgery.
One year later (November 2004), Kendelle's shoe lift was getting shorter as her right leg grows. We went to get another shoe lift and this time it was 8 cm difference. Dr. Farley mentioned that Kendelle might be having a surgery anytime soon because her situation changed. Now, lengthening's still an option since Kendelle's right leg was growing a little slower than normal. The x-ray shows that she's still missing a bone in between her hip and thigh, and is scheduled for surgery on April 2005 for a left femoral head stabilization with screw. In another words, they will put a screw in between so that it can function as a bone and HOPEFULLY nature will take its course and turn it into a bone. If not, a longer screw will be replace as she grows. There's a waiting period of 2 years in order to find out the outcome, and her lengthening will not take place until the year 2007 or 2008.
Please feel free to contact us at pril14@yahoo.com for any comments or questions.
Comments
Van Ness
Our younger daughter (2 years old) has bilateral PFFD but one of her legs is not affected as much as the other. Her right foot falls at about the knee of her left leg. The doctors have told us that Van Ness is a good option for Allison. Like you, we're trying to get as much information as possible. It has been difficult to find people whose child has had Van Ness. I'm sending emails to parents with stories on the website and hope to get some information from them. If you have any information or references you could share that would be great.
Your daughter's case certainly does illustrate why sometimes you should wait and see how the bones grow. We aren't in a huge hurry to do anything since Allison walks well with her prosthesis. We're just trying to get all the information we can about the various options.
Thanks.
Cheryl
Van ness
I would be glad to talk with anyone just email me at tlathrup@comcast.net. My daughter is 13 and has had the Van ness done 10 years ago.
Teen with PFFD & Van ness
Hi,
Me and my daughter have been seeing Dr Farley for 6 or 7 years now. Kayla has had the Van ness rotation done and is doing very well and every 3 years or so we have to have another surgary done to turn her foot backward again do to the muscels keep trying to pull it back forward again. If you would like to talk some time please email me at tlathrup@comcast.net and we can exchange phone #'s if you would like.
Thank You,
Tammy & Kayla