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Congenital short femur/PFFD

Hi, I have an 18th month old daughter that was born with Congenital short femur/PFFD with her left leg shorter than her right. Since she was born I have been taking her to the Childrens Hospital in Oakland, but I recently decided to change over to Shriners. Basically my two options are either lengthening or amputation and I don't know what to do. Can anyone who was gone through either one give me any feed back about your experiences. Thank you

I wish there was a quick answer to this debate, but as you read the articles there are various reasons for choosing each option. Most of the reasons are based upon what condition the hip, thigh bone, and knee are in, and if you are missing any other bones in the affected leg. Could you update us with any information you might have about your daughters discrepency, future discrepency or any other issues that your current doctors have pointed out?? If you could share those details that would be most helpful. In our case we ended up choosing lengthening for our daughter McKenna, but we did consult with many different people, doctors, and did alot of research before we made our choice. We would love to help, so if you would like to chat you can email us at, or call us collect at 763-494-8823 anytime. This is the busier time of year as far as sports, school vacations and the like, so if we aren't home just leave a message and let us know what is the best time to call you back. We look forward to hearing from you soon!!


Chuck, Karla, Dylan & McKenna

I can't say from experience what option is best because we also haven't made our decision as far as our daughter goes, but it sounds like we could give eachother support. My daughter is 11 months and we are stuggling wether to lenghten or amputate. If you are interested in e-mailing me at, I would be happy to share with you what the doctors have been telling us. We have already seen three different ones!!
Take care,

Hi, I have an 11 year old boy with short left leg- cat. A/B. He was misdiagnosed at birth and was in Bryants traction for dislocated hip. It took 2 weeks before proper diagnosis of PFFD. We struggled finding doctors and a good orthotics supplier for shoe lift. At about 3 years, AJ was accepted at Shriners in Philadelphia- we live in Virginia Beach and are glad to travel the 6 hours for all of AJ's appointments. The Drs and staff are all amazing. Plus you don't feel so alone. There are lots of other kids with the freaky looking external fixators sticking out of legs and they are busily playing video games, air hockey, wheel chair racing, etc. AJ was projected to have around 8-10 inches discrepincy. His hip needed to be stabilized when 4 years to prepare for the future lengthenings. Then at 5 years he gained about 2 inches over one years time (start to finish)and another 3 inches at 8 years old. He attended public school the entire time and did quite well during the year ordeal. Major problem was with the pin site infections. he was on Amoxycillan the entire time for both lengthenings. We have our annual appt this summer with Shriners and we will probably discuss his 3rd lengthening for the upcoming year. My son is happy with the results of the lengthenings, even though they make your life stressful for about 1 year. He has always worn a shoe lift of around 1.5 inches to help him compensate but he gets around fine on his tip toes also. I think the Shriners is fantastic! They will give you plenty of good advice for you to make the right decision for your family. Best of Luck!

Whether to lengthen or amputate or to do no surgery at all and just get a prosthosis depends on the leg and the structure. If you want to read stories of people who have done either you can go to the Personal Stories section ( and ( . There are LOTS of stories of people who have shared their experiences over the years. If you click on the name of the author you can send a private message to that person. Since you are in California, you might want to also talk to Dr. Moseley who I believe is also still in California.

Good Luck!