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Our Third Miracle

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. Has anyone gone through this much lengthening? I know we have a long road ahead of us. One more question- How do I help Bryant walk until his first surgery? Did anyone have to use a brace until the leg is lengthened? I appreciate your help and advice.

Comments

I can’t offer you any advice about what to expect, but I wanted to offer you support.

Our daughter was born on June 11, 2004. Her left leg is about half the length of her right. Her left foot is at about the same level as her right knee. We have chosen Dr. Paley & Dr. Herzenberg as her surgeons. She is expected to have the Super Hip/Super Knee surgery when she is 18 to 24 months old. After this surgery, we have to decide if she will undergo the Van Nes procedure or multiple (about 8) lengthenings.

If you ever wanted to talk, let me know so we can set something up.

Beth

How is things going? We live in florida and grandbaby #4 sounds alot like your case. Now we are so afraid of what the future brings. Please help me out. We dont have measurements yet. The babies knee looks like it is almost at the top of her leg on the right side. Now with her being a new born she keeps them so tight you cant hardly tell, unless you know what to look for.

Rhonda