If you are new to PFFD - I recommend starting with the PFFD book

confused.

hi my sons 10 months kenzie and has pffd he also has a lot wrong wit his hip n docs say they will have 2 take his hip away n replace it with his knee or they will fuse it til his thigh which will mean he wont b able 2 move his leg from side to side,,, they have also said lenghening wont work and have gave us the option of amputating or a rotationplasy(foot turned backwards) its so confusing,, rotationplasty semms like a good option but im worried what kenzies reaction will be when hes older , will he blame me? i

Our 11 month old daughter has PFFD

When I was 25 wks pregnant, me and me husband found out that our daughter would have a shorter and bowed right femur bone. It was the biggest hit in the face of my hole life....especially her being our firts kid. Since her birth we have been through a lots of appointements for her condition, and they are planning on a first lenghtenning surgery around 4 years old. It seems so far,... Today she is 11 months....she never crawled but she bum shuffle. She has an orthodic that she wears when she stands.

PFFD online chat on Thursday June 23

Quick reminder - Dr. Standard is hosting an online chat on Thursday June 23 at 8 PM EDT (US). This is on the subject of congenital limb differences, which includes PFFD/CFD as well as fibular hemimelia and some others.

This is a great opportunity to come chat "in person" with one of the surgeons at the International Center for Limb Lengthening, to get some initial information without having to travel. It's also a good way to meet other families with similar concerns. We have had more than a few pregnant moms do this chat too, for fact gathering.

PFFD and having children

Hi All! It is great to read everyone's experience with PFFD. I am a 27 year old female with unilateral pffd (right leg) and my parents chose lengthening for me along with using shoe lifts for any discrepancy still left. Though doc's have been able to lengthen my leg a total of about 5 inches, I do still have a diff of approx. 4 inches. I have an amazing life w/ amazing family and friends around me who have always encouraged and allowed me to be myself. I define my birth defect, it doesn't define me!

older bilateral PFFD

HI! I'm a female , 3'10" with bilateral congenital absence of femurs, patellas, and illiums. I stopped using prostethics years ago, as I couldn't handle them. I'm getting incontinence from a 'dropped bladder' My urogynocologist isn't sure how to insert a 'sling' with all my missing bones. She inserted needle in my ankle to thread up toward my heart but at my waist, it went in directions she didn't see before and stopped. Does anyone have suggestions on how I can get a 'sling' proceedure. Thanks for any help you can give me.

PFFD: 

PFFD

I am the mother of a 28 year girl who was born with PFFD. At the time of her birth ultrasound was not being used that frequently and I had no problems so none were taken. It was a total shock when she was born with a very short leg. The orthopedic doctor came in and told me that she would probably have to have her leg amputated and she would probably not walk. Of course we were devastated but after consulting with a pediatric ortho we were told this was not so and she would lead a pretty normal life. She was just a beautiful litlle girl and we took her home and loved her.

21 week ultrasound shows pffd

Hi there I am from Edmonton, AB. i am 21 weeks pregnant and just found out our daughter has pffd, I am devastated. The doctor gave us the option of terminating the pregnancy in the next week, but I cannot do that. Her right femur is about half the size of her other one right now in the scans. Her lower leg bones are fine and has 2 feet. I am really sad and scared, will my daughter have a "normal" life with a prosthetic leg? We met with a great lady who works with pffd kids in Edmonton and she gave us some great options.

Help..bilateral above knee amputation outcomes?

My five year old son, Cai, had bacterial menegitis as a baby and it caused a lot of tissue damage in his legs. We had multiple skin grafts and a muscle removed from his lower leg when he was recovered from his illness at Shriners Hospital in Cincinnatti. Since then he has been seen regularly at Shriner's in Lexington to monitor the development of his legs. X-rays from early on showed that his bone growth plates in both legs were severly affected by the menegitis and the head of his femur bones have failed to form correctly.

PFFD chat online THURSDAY May 26

Just a quick reminder that the Rubin Institute doctors will be doing an online chat on congenital limb differences this Thursday.

This is a great way to get more information and opinions, as well as to meet other families for support.

Please contact icll (at) lifebridgehealth.org for additional information. (Note this chat requires a password, so you will need to contact us ahead of time).

Options

I would like to find out thoughts from other people, whether it be parents and or actual older children or adults living with PFFD on what treatment is the best or why you think it is the best. We were given 3 options and I am noticing from researching allot of people did nothing except get a prosthetic leg over there own leg and foot, I wonder why we weren't given this option, or is it just a given to do nothing?

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