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My daughter was born in December and has been diagnosed with PFFD. I'm wondering what treatment options are available and what we should expect in the coming months or years. She is only 3 months old and this is all very new to us. She has a twin brother who is not affected.


I would recommend doing all the research you can on the web at this point. There is no point going to see different doctors because they will all tell you the same thing - you have to wait a while to see how the leg progresses. The "best" doctor for lengthening is considered to be Dr. Paley at Sanai Hospital in Baltimore. You may want to call there and they will send you a packet of information.

Thus, just enjoy your little bundle of joy. She will go through all the same milestones as her brother, and probably at the same time. When she starts to stand you will need to get her a shoe with a lift on it so her legs are even.

We are just starting our journey as well as my son is 15 months. This site has given me a lot of inspiration and ideas.

Good luck!

Hi Candice,

My name is Danielle, I had twins April 2004 (Both girls). and one has been diagnosed with pffd while the other is unaffected. When I have more time I'm going to add our story to the website. It has been an interesting year, this is something that I never thought would happen to us. I used to worry more about Abbey being a twin ...will she compare herself to her sister all her life???

Abbey has exceeded our expectations, she's an amazing, determined little girl. She was the first to roll over and the first to crawl. She now pulls herself up in her crib (something I never thought I would see) and pulls herself up on furniture. She watches her sister climb stairs and she too can get up one step. My point is that the twin is a significant motivator. Only last week while our physiotherapist was observing her at play, she raced her sister to a toy and won...nothing seems to slow her down.

She's ready for her first prosthesis, we had the first fitting last week and will hopefully have it in time for her first birthday. Abbey's a unilateral case - right leg - Class B. Her leg length discrepancy is expected to be 29cm and lengthening is not an option. We are considering amputating the foot however I'm still looking at the research so we will not be making the decision for a least a few more months. The Van Nes Rotation was not an option for us as Abbey also has fibular hemmimelia. Treatment options really depend on the individual case but there is a great article that Mike has written on this website that really explains the options well.

Whatever happens, I know that she'll be o.k. I have an amazing husband who is so positive. Together we'll never treat her any different than her sister.

Hi Candice,
Congrats on your twins. My third child was born on December 20th with PFFD. He is also missing 2 fingers. He is probably a class B, possibly C - we went to Dr. Paley on Feb 17 - we will be going back on July 6th for an arthrogram of Karson's leg. This will give us a better idea of how much reconstruction has to be performed on his hip and knee in order to make lengthening a success. When he is around 2 they will perform the hip and knee reconstruction. His first lengthening will be around age 6 and he will undergo 3-4 lengthenings.
We went to a few doctors before Dr. Paley. Shriner's Chicago recommended both amputation and van ness. Rainbow Babies in Cleveland recommended van ness. Through my own research we found Dr. Mosely in California - we were going to meet with him if Dr. Paley wasn't able to lengthen.
These are the treatment options that I have found. I wish you well in all your future decisions. Every case is different as well as each individual. I started a journal for Karson stating what research I have done and why I opted for our treatment choice. I thought it might help him understand our decisions better. Good Luck