Hi my name is Julia, our family lives in Australia.
My Son Christopher turns 15 today, he has unilateral PFFD. I have only know the correct diagnosis for over a year, and only found out while we were searching for information on Van Ness Proceedure.
Christopher has met other kids with limb differences but no other that has the same or closely the same as him, i suppose due to our smaller population.
During the scan of the second trimester of pregnancy a doctor at the Arnau Hospital (Lleida) detected a dysmetria in her left femur. This was further confirmed by another scan at the Val D’Hebron Hospital (Barcelona). As parents we wanted to know how it was going to develop. A traumatologist spoke to us of a process called “lengthening”.
In May 2003 Laura was born. She was diagnosed of a congenital short femur and hypoplastic of the left fibula.
My daughter, who is 2, is having the super hip surgery by Dr. Paley on January 15th. She is having an MRI in December. Have any of you had any experience with the sedation and the MRI? What can we expect? Also, have any of you had to donate blood for your kid's surgeries? Any advice would be appreciated.
CJ was born with PFFD of the right leg, severe. We did not know this until he was born. During my pregnancy I had 3 sonograms, but none of them revealed this. In fact, when he arrived, the nurses wrapped him so that we could not see. I happened to ask "Does he have all of his parts?" thinking that was a cute way of asking if he was ok, but nobody answered me. I didn't think much of it because he looked beautiful from what I could see. After 22 hours of labor, the nurses took me away to nap for an hour. When I awoke my husband broke the news to me, and it was difficult at first.
My name is Zachery, and I'm almost sixteen years old. I've lenghtened since I was two, but recently, I've run into severe problems. My femur was removed years ago to make room for a prosthetic that didn't work. Paley assumed we would be able to put in another prosthetic, but for that to MAYBE work I'll need bone graphs. I also have a fixator(that's loosening and falling apart) that's been on for over a year, that can't be removed until the prosthetic goes in in at least two months. I wonder, is it worth. I'm considering a whole leg amputation for once in my life.
Firstly can I quickly say how helpful this website has been.
I live in the UK and have come across very little about my condition (it's never even been given a name) so it was quite emotional to read some of the stories and realise that I'm not alone.
Secondly, I'm looking for some help. I've had a growth defect since birth (so for over 30 years) and have had little surgical treatment for it.
My left leg is significantly shorter that my right. Although it is a lot smaller than normal I do have a full leg - hip, knee, and foot.
The Children's book I wrote, "Imagine...Amazing Me!" is being printed and will be out in January. If you would like to pre-order, I will send you a form. Just email me at: Libbi123@cox.net. I have it as a pdf file.
You can also take the form to your local doctor's office, PT/OT clinic and schools if you wish. A lot of people are excited about getting the book out there.
I just wanted to say hello to everyone. I've read so many personal and very intimate stories here I felt like it was my turn. I have a beautiful daughter with PFFD she is 8 years old (will be 9 very soon) Unilateral, rt leg, class D. She had Rotation Plasty at age 2 at Shriners Hospital in Portland, Or. She is absolutely amazing and very well adjusted and happy. Although I knew a time would come when she needed more support than I could give her and it seems that time is now.
Hello! I've posted on this web site before. I am now 55 and would like to know if anyone out there with PFFD is older than me. When I was born in Texas my parents were told that me and a girl from Dallas were the only ones in Texas at the time born with this deformity, but thay didn't have a name for it then and I still come across doctors that don't know much about it.
I've found that not every prosthetist is capable of dealing with a PFFD residual limb. As we all know, there are many issues to address for us... unusual limb shape, alignment, joint issues, etc... I finally found a prosthetist that realized he had to align my prosthesis differently than standard above knee amputees. Getting your knee center even is particularly tricky!
