My daughter was born with unilateral PFFD. It wasn't caught on any ultrasounds, so we were quite surprised when she was born. She is such a delightful little girl and perfect for our family. We're excited to find a community of others with PFFD to learn from and share with. I've started a blog to chronical our journey. Please feel free to visit: www.Elsiesleftleg.blogspot.com
We'd love to hear any comments or advice as we are just at the beginning of the journey. Thanks!
Comments
pffd and hip displasia for us too
Hi!
Our son Lucas was born in July. We also have also gone through the hip harness for hip displasia. It was on his right hip (his "good" hip). I loved your blog post about having your squishy baby! I know what you mean. Lucas didn't get diagnosed with the hip displasia until he was 4 months old and they were doing an ultrasound on his left hip (little leg) to see what it all looked like (they couldn't see much).
Your daughter looks like she has a similar leg length as my son.
Shannon
If you ever want to bounce
If you ever want to bounce thoughts/ideas/etc off of each other since our kids are so close in age and will likely go through the process at the same time, feel free to email me. elsiesleftleg@hotmail.com
Jackie
Your sweet baby girl..
I was born with pffd 46 years ago. My life has been measured by challenges, obstacles, and much success. I am an above the knee amputee, fitted with a funky, bionic artificial leg. I just wanted to let you how much the support and love of my family helped me face and overcome the difficulties I have been subject to.
My parents insisted I be an active part of the family, camping, hiking, biking, swimming, no exceptions were made or permitted. My family helped me be strong when facing teasing or staring because of my obvious difference. My parents believed in me and gave me the confidence to be successful in school, work, and parenting.
It sounds like your precious little girl will be surrounded by the same love and support I was blessed with. I will be thinking of you all...
Thanks for your kind words
Thanks for your kind words and encouragement! It is truly our goal to make our daughter be a part of our family and activities just like her older sister and raise her to know how wonderfully made she is. :)
CFD
Hi Jackie,
My daughter, Lily, was born with CFD/left leg. Like you, we had no idea prior to her birth that she had the condition. It has been a long journey but today we are halfway through our first limb lengthening. Lily turned 3 in November and does everything that any other 3 year old does.
We chose Dr Paley, and are very thankful that we have. Him and his staff are so wonderful and caring.
Good luck with everything!
Feel free to find me on facebook and you can check out a bunch of her pictures.
Jamie Pereira
jamiebier@gmail.com
my son Isaac
Hi, My 22 month old son has pffd as well and is due to have lengthening surgery on his left leg when he is around 5 years old . (This is what the surgeon recommends), Just Wondereing how your little made out with her surgery and , if you dont mind me asking, why at age 3? My husband and I are researching CFD ad much as we can but its hard to know if your making the right decisions for your little ones. Thanks, Katie
my son Isaac
Hi, I was wondering how much shorter is her left leg than her right? My son is almost 2 and wears a 1 inch shoe lift now but his discrepency is almost 1.5 inches. Just curious how she made out on her shoe lifts. He does great right now but his surgeon wants to wait until he is 5 or 6 to do his surgery,(basically until his shoe lift is to big to walk on). The Dr thinks Isaac may only need the one lengthening if we wait as long as possible. I would appreciate any info you can give me , Thanks , Katie
Born with unilateral PFFD Type 1B
I was born with PFFD Type 1B 24 years ago, it is a daily struggle everyday but for me it's worth it. The main reason it is worth it is because my mother fought even as a teen mother to not let any of the doctors tell her that there was no chance I would ever walk and that the best thing she could do for me is to have my right leg amputated. Amputation isn't for everyone, and it wasn't for me. I wear a 10 3/4 inch shoe lift and am very proud of it. I have had a shoe lift since I was 2 years old and back then it was only 2 inches tall. I have had surgery on my right leg to correct the right hip and some lengthening (1.5 inches) and surgery on my left knee to stop the growth in that leg (none of the females in my family are very tall anyway and I'm 5 feet). The best thing you can do is support your child in whatever course of treatment they want to take, doing anything just for cosmetic reasons is not always the best choice.
Another CFD girl
I am just getting on PFFD.org after a long absence. My 4 year old is Abby and Lily is another friend of our's. Her mom commented below. We just went through the first lengthening together. I'd love to visit with you further, email me at jenniferbethscott@hotmail.com.