Hi, I was searching online for answers about PFFD and came across this discussion group. I have had 2 ultrasounds this week both showing that my little girl's right femur is shorter that her left, about 2/3 the length. I have not met with the orthopedic Dr. yet so I'm not sure if this is even the diagnosis yet. Just wondering, because of the grueling waiting game, if this is what was seen on ultrasounds of people using this site and were there any other things that the doctors thought it might be besides PFFD. I'm feeling really horrible right now. Any advice or comments would be helpful.
PFFD
I know exactly how you are feeling right now. We found out that my son had a short femur at my 20 week ultrasound, too. His right femur was 5 weeks behind his left. We were sent to the University of Iowa hospital and had another ultrasound there and they recommended doing an amnio test, too. Everything came back completely normal. I think the scariest part is that PFFD is very rare and most Dr's have never seen it. I have done most of the research myself and told my doctor about it! Its very frustrating and scary but it will be ok! There is a doctor in florida Dr Paley who has a website with tons of info and success stories that are very encouraging. www.lengthening.us My son is 6 months old and will have his first surgery when he is 2. Until then, we just get to enjoy him and watch him grow! He's so strong and perfect in my eyes :) I hope this helps ease your fears a little....I wish someone would have told me this when I was pregnant. If you have any other questions or concerns...please don't hesitate to contact me cosmocaroline@yahoo.com
Have been there also
January 14, 2008 seems like yesterday. 26 week ultrasound. Our child's right femur was about half the length of the left. The perinatologist had never seen it before, neither had the OB or pediatrician. I spent the next 12 weeks praying for that leg to miraculously catch up. We knew there was really nothing we could do to make it grow, but that we'd go to Scottish Rite in Dallas when our baby was born. I asked myself time and again, "what did I do during pregnancy to make my baby's leg short?" Abby was born feisty and strong. When she was about 3 weeks old I was thumbing through a sweet book (Imagine Amazing Me!) and looked up the first website, www.pffd.org and instantly I had the answer to her condition. It has been a tough journey at times, but we have met the most incredible people that we never would have crossed paths with had it not been for our journey with PFFD/CFD. Dr. Paley did Abby's superhip and superknee in April 2010. It was a really hard journey but she came through it just fine and runs around like nothing ever happened. We know we are in for a lifelong journey but also know we are in the absolute best hands. I am so glad you have found support during these last few months of pregnancy. You're going to be WAY ahead of where the rest of us were! Please feel free to email me at jenniferbethscott@hotmail.com. I'm still a Facebook holdout but all our buddies are on there!
CFD/PFFD
Just wanted to say hi! My little girl was diagnosed with PFFD at birth. I never learned from the 15 ultrasounds I had that she had the condition so I don't know what you are going through in that aspect but I can tell you how I felt afterward...I was miserable! I also want to tell you that right now (She is 26 months)...it's like nothing is wrong with her. She runs around like a normal child, she keeps up with all the kids her age and she is just amazing. She just had hip and knee surgery with Dr Paley in November and is doing even better since then. She was walking within a week of her cast coming off.
I would like to tell you not to worry but I know it won't help...If you ever need to talk or have questions feel free to email or message me!
Jamie
JamieBier@gmail.com
Hang in there! You will be
Hang in there! You will be holding a beautiful baby girl in your arms soon! I had a similar experience and because many doctors do not know about this, there aren't many definite answers and they scare you. My 19 week ultrasound showed our son's right femur to be about 3 1/2 weeks behind his left. The radiologist asked me if I had been in a car accident! We were referred to a genetic counselor who told us it might be Down's Syndrome because they can have shortened femurs. That didn't make any sense to me because one of his femurs was of normal length. We had the multiple marker testing and everything came back normal. They also sent us to have his heart tested through ultrasound and those results were fine, as well. We continued to monitor the growth during pregnancy through ultrasounds and discrepency remained about the same. We also met with an orthopedic doctor during pregnancy just for information. Needless to say, I was so frightened mainly because I did not know what to expect. Looking back, I wish I would have just been able to relax and enjoy my first pregnancy. I feel like the doctors really scared us. Our son was born healthy and the leg length discrepency was barely noticable. The pediatricain that came into to see him when he was first born couldn't even notice the difference. He has been the greatest joy in my life and having PFFD does not hold him back at all. He was crawling at 5 months and walking at 10 months. He is almost 2 and a very bright, busy little guy who is talking in sentences and runs all over the place. We go back to the orthopedic doctor soon, so we will see if he will recommends a lift in his shoe, but he hasn't really needed one thus far. Even if he did, it would be okay. Try to enjoy what you have left of your pregnancy because everything will be okay! :)