Personal Stories

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.
Thanks,

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.

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.

We were blessed with our third child. My pregnancy seemed like the other tow until the seventh month when we were told that there was some problems with our babies measurements on her u/s. The doctors could not tell us what was wrong so they just kept telling us different things. They told us she could have brittle bone syndrome then they told us she could have acondroplasia (dwarfisim). They then decided that because they did not what was wrong it was best to deliver her. so 8 weeks early and 2.5 lbs there she was, Tai. It was only discovered then that she had pffd. Tai has bi-latteral pffd a

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.

Hi there! My daugter, Sami, has PFFD...or CFD, as I was told yesterday. I guess it's more "politically correct." Sami is 7 1/2 months old and a complete JOY!! We went to see Dr. Paley yesterday for the 1st time. It was the first time we even saw an x-ray of her. Very interesting. Dr. Paley diagnosed her as "type 3." He said he "could" lengthen, but painted a very bleak future. He was much more animated when he spoke of the rotation. As parents, you know...we want the BEST for Sami...we are going to teach her to be strong, proud, smart, confident...know she's beautiful...just as we would if she didn't have this...PFFD. She's a WHOLE person...as you & your kids are...not just a leg...so my question (I'll get off my soap box, I'm actually prepping myself for when I have to talk to friends/family!!)

Jonathan's story has been posted under "Florida" on the other PFFDvsg web site for a few years now and is reprinted below. We were very happy with the results from both lengthenings although it was not an easy process. Both lengthenings were done at Shriners Hospitals--the first in Tampa and second in Twin Cities.

A must-read for anyone trying to make a decision:

http://www.baltimoresun.com/news/health/bal-hs.limb28jan28,1,842800.story

It doesn't really show more options than just lengthening or amputation. But I suppose in order to feature all the choices and to throw everything into the mix, the article would have taken up too much space.