Hi there I am from Edmonton, AB. i am 21 weeks pregnant and just found out our daughter has pffd, I am devastated. The doctor gave us the option of terminating the pregnancy in the next week, but I cannot do that. Her right femur is about half the size of her other one right now in the scans. Her lower leg bones are fine and has 2 feet. I am really sad and scared, will my daughter have a "normal" life with a prosthetic leg? We met with a great lady who works with pffd kids in Edmonton and she gave us some great options. I just never thought this would happen to us, we have one son already 2 years old and he is fine. I worry that my child wont have a good quality of life and will be in pain. Can someone please email me back. thank you
L
PFFD
My daughter experienced the same emotions when she found out during her first ultrasound that there was a limb length discrepancy with her son. He has a very short femur of the left leg and he gets along VERY well with a prosthesis. His left leg is about half the length of his right leg. He has a normal left foot and shin bone. It's so sad that doctors think that terminating a pregnancy because of PFFD is a solution!! After my grandson was born (he's now 7 years old) I realized quickly that this condition wasn't going to hold him back from anything! He crawled, he walked, and now he's climbing trees. Rest assured your child will have good quality of life. My grandson has never complained of pain with this condition. As of right now he's had no surgeries. My email address is nbaum012@yahoo.com if you want to email me - feel free anytime! We live in Iowa and visit Shriner's Hospital in Minneapolis for my grandson's care.
Hello Baumhover
I noticed your comment here, I was curious to you saying your grandson has never had surgery or anything and wears a prosthetic does his little leg fit right in it with his foot too? I am a mom of a almost 6 month old little girl. I have SO MANY questions to help make a decision...
I know what your going
I know what your going through, as our 8 month old son has pffd. I also have a 3 year old boy and my 8 month old has a twin brother . After having a healthy son, I know its hard to hear your child was born with a birth defect. Its one of those things you don't imagine happening. My son , Isaac, is otherwise a healthy normal active baby and my husband and I dont dwell on his condition. I know its hard not to worry but Im sure she will be a happy little girl and she will deal with her pffd fine. Isaac only has an inch and a half length difference but it would be around a 6 inch difference as an adult. He will be getting lengthening surgery when hes 3 or 4. I found that researching pffd has really helped a lot and would encourage you to check out Dr Paleys website at www.limblengtheningdoc.org/ We learned so much from his website.
Hi
Hi, I've personally lived with PFFD all my life. I'm now 20 and have never had any surgery and wear a full length prosthesis as my leg is about half the size of my 'normal' leg. My parents always gave me the choice if I wanted surgery or not and I'm grateful for that. If you want to ask any questions to put your mind at ease, I'm quite happy to help out if I can and will answer as truthfully as possible :) I hope all is well. Hannah
Abortion
If anyone is considering abortion just because your baby has PFFD, please contact me first. There is so much more to a happy, healthy life than a femur. It's a bone. It doesn't make you who you are. It's not going to make your baby stupid, ridiculed, or any different. It will make your baby stronger, more empathetic and more caring. I am a 28 year old female, born with Class D PFFD and wouldn't mind at all talking to anyone if they have any questions.
PFFD
We didn't learn of Lily's PFFD until the day she was born, all I can tell you is it was the worst thing in the world to discover your perfect little princess has a problem. I was so angry at the world, the doctors for not finding it on ultrasound and myself.
The pain goes away once you realize the treatment options. Lily does EVERYTHING a normal child does. She was walking at 17 months on her own. In fact the day she learned to walk with the lift she actually walked just as well without it. She isn't different than any other of the children in her age group, she does everything and more than her peers.
She had superhip and knee surgery with Dr Paley in November, and the day the Spica cast came off she was up and walking. She walks much better since that surgery. With the exception of post-operative pain, I have never once heard her complain about any type of pain or discomfort.
We let her pick out any shoes she wants and we send them to this great place who can put a lift on almost anything. Her friends at school find her shoes interesting and actually want to try them on.
Please try not to worry, she will do nothing but amaze you.
Please message me if you would like. I would be more than happy to share photos with you.
Jamie
lengthening and shoe lifts
Hi, I just wanted to ask you a few questions if you dont mind, My son Isaac is 9 months old and has unilateral pffd. His discrepency is about an inch and a half. We have been in contact through e-mail with Dr Paley but have yet to see him in person. We are planning on lenthening for Isaac in the future. I have heard about the superhip/knee surgerys, but could you tell me if anyone who has the lengthening procedure has these surgery's as well? Is it to prepare for lengthening? Also, We are in the process of getting shoe lifts for our son, any advice you could give me would be appreciated, thanks, Katie