My son Julian is 8 months old and was born with pffd of the right leg. He sees Dr. Davidson at CHOPS in Philadelphia. Julian had xrays done at hershey medical center and we found out that he doesnt have a kneecap, or a joint in his hip, i think it's called asatablum? his right leg is about 4 inches shorter than the left. So lengthning may be a option but not sure because of the hip, most likely amputation. Im really worried and upset about everything, im 27 years old and this is my first child. does anyone have any encouraging advice? Please.
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Let me know if I can help
Congrats on the birth of your first child!! I am your age and I also have a son who is 13 months old born with PFFD of his left leg. There is about a seven inch difference in his two legs. He is under the care of Shriners Childrens hospital in Chicago and recieved his first extension prostetic when he was about 11 months old and I am proud to say he began walking about a month and a half ago!! We will see the doctor again in the spring and he may do the VAn Ness Rotation but for now...we just take it one day at a time. He is an amazing child..I also have a set of twin girls and he shows them every day who is boss in the house. I am learning alot as we go but please let me know if there is any advice I can give to you. Believe me ...I know what you are going through. Proud mom...Angelflower
My Julian
Congratulations on your new baby, well not so new now.... My first born son whose name is also Julian was born with bilateral pffd. He has it in both legs. His right leg is about 2 inches shorter than the other and he is also missing his Fibia's, which are the weight bearing bones in both legs below his knees.
We go to the Children's hospital here in Atlanta, GA and we love our orthopedic surgeon who is Dr. Schmitz and our physical therapist, Colleen O'Berry. They are just awesome.
For encouraging advise just remember that there are others out there in your situation and that as long as your baby grows up healthy and strong and with lots of love what more could you want. My son is so vibrant and healthy, when he doesn't have an ear infection that is all that I can wish for. I know that we are coming to that point in time where we will have to be making decisions about surgery soon and it will be hard, but we will make it and so will he.
You can see pictures of him and his legs on my blog at www.emilyguerra.com. You might have to scroll back some way but you can see his feet and his braces...I think.
Good Luck.
I was 27 when I had my first
I was 27 when I had my first child too. She has unilateral PFFD (right side) and she also does not have the hip joint, like your son. We tossed around many options at first (one of which being amputation of her foot) but decided to keep everything intact for now and see how she grew with what she had. All I can tell you is time really does make everything easier to handle. When I look back at the emotions that were going through my mind in the beginning, I can say they are much better now (Julia is 3). It started getting better when she got her first straight-leg prosthesis (she still has this kind now) at 10 months - I took a picture of her in jeans and could not believe how tall she was! Up until then she seemed so short because of her short leg. Since then we have seen her grow, get fitted for several more prosthetic legs and feet, compensate when she needs to, and overall have a positive attitude about her leg. She now understands that God made her different and is OK with that - I know that won't always be the case, but for now, her attitude is very good. I can tell you we have come so far in our emotions that we have just recently re-visited the idea of amputating her foot so she can have a prosthesis that bends at the knee and give her greater mobility - to show you that time really does help, this is something that I as a mom could not even bear to think about when she was born. My advice to you is two-fold: 1 - do research and talk to prosthetists as much as you can on the options out there for these kids. It will become evident over time what are reasonable options for your son (Julia's little femur didn't even show on x-rays until she was 21 months old) and what simply won't be able to happen (like the lengthening procedures). 2 - enjoy your son now and watch him amaze you and others at what he will do in the next few months. You will be able to look back and see how far you have come! Your son needs you to be a positive influence on him and will be all the better for it - even when it is hard for you, try to be strong for him, especially now. God bless and I would love to hear how he progresses.