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Johanna - our daughter with bilateral PFFD

Hi! Johanna is now 5 years old. She has bilateral PFFD, also complicated by a foot which turns outwards and no right hand. Johanna is not walking. We are very keen to hear from any and every other children or adults with bilateral PFFD. We have lots of questions about treatments, what we can expect etc.
Please get in touch!

What to do next?

Hi I am a father of two beautiful boys the youngest one born in July 2003 with pffd.He is a dream come true. He can probably climb better than any kids without this condition and along with his older brother light up our lives. He is penned in for lenghtening in September this year. The problem is that it is very diffucult to make a final decision to go ahead with this operation. The difference to date is approx 6cm. At full growth it will be 20+ cm. Does the end justify the means? Each time we speak to our surgeon the future looks bleaker, and living in Ireland there are not many people with this condition and therefore no support groups .

Adult with PFFD

I am a twenty eight year old female with bilateral PFFD. I'm interested in hearing from other adults with this condition.

One Opinion After Another

My daughter was born in October 2004. She is beautiful and already very determined. She has unilateral PFFD, Akins class D (no femur or hip socket). We have already been able to find out so much about treatment options. Thank goodness for the internet. We have researched all the possible options from no treatment (prosthesis alone), to foot ablasion, and Van ness. We have seen 3 different surgeons. All of which give a different opinion on which surgery would be best. I have seen two different prosthesist which both advise leaving the foot intact but one says to do Van ness and the other says leave the foot as is.

Teen with PFFD & Van ness

Hi all,

I am here to tell you about my daughter Kayla.

When I was 3 months pregnant with her they gave me an ultrasound. They told me that her right femur was not there. This scared me to death. Then a month later the doctor's ran all kinds test to see if there were any other problems with the baby. They tried to tell me to abort her because she might be autistic or have downs or other problems. But my friend that has a downs daughter told me GOD only give you what you can handle. So I had Kayla on March 2,1992 and when she was 3 month old I took to U of M Ann Arbor to see Dr. Lenard. He is the one that told me that we could not lengthen her leg but we can do the Van ness Rotation. That is what I thought would be best for her and we did this when she was 3 years old. Now every 3 years or so we have to rotate her foot backwards again do to the muscles try to pull it forward. Kayla is a very active young teen she roller skates, plays basketball, swims and plays softball for her school. I would love if any other teens with these similarities please email us at and we can get them to chat with each other or if there are any other parents would like to talk I would be glad to.

So Many Questions

Our baby girl, Nicholette, was born in 2003. She is diagnosed with Fibular Hemimelia. We are seeing Dr. Widman in NYC who said that the solution will be a leg lengthening. We do not have a lot of information about this topic. If you have any insight or if you have any experience in this matter please contact us. As of right now she is predicted to have about a 10cm discrepancy. They are saying one operation definitely but maybe 2. Nicholette’s ankle needs support so we are always looking for high-top shoes to give her more support. She has not been put in a brace at this time. The docs still want to wait for that.

What to expect next?

My 8yr old daughter had her first lengthening done in May 2004. She will be getting her external fixator taken of this Wed Mar 23. We were able to grow back 6cm during the lengthening. We found out last month that her knee has dislocated posteriorly. We will be going through some very extensive surgery to realign the knee and balance the tendons of the knee. We may even end up have to loose some of the length we just grew back. I was wondering if anyone else has seen or heard of this before, what to expect and some helpful tips on how to help my daughter get through this?

Decision Time

I'm a mum of two beautiful boys the second haven been diagnosed with pffd. I'm struggling with trying to make the right decision for him and I'm very concerned with the extent of the pain and trauma lengthening may cause him. I'd love to hear from people who have gone through this process and the various stages of it. I'd also be very interested to hear from people who opted not to go for lengthening and how that decision has affected their lives both for good and for bad. Perhaps if I had some direct comparisons it would help me make a more informed decision.

My Precious Baby Girl!

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.

Our Third Miracle

We were blessed with our third child April 23,2004. He has been diagnosed with PFFD. His right leg is predicted to be 23cm shorter. We saw Dr. Standard in Baltimore when Bryant was 5 weeks old. Dr. Standard is in with Dr. Paley. We are planning to do leg lengthening. He will have his first surgery this fall when he is 18 months old. They will work on his hip, femur, knee, and ankle (I guess kind of reconstructive type surgery). We will not do lengthening at this time. I was wondering what to expect with this surgery. How should we plan on caring for him? Also, 23cm is a lot to lengthen.


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