Tibia hememlia

Does anyone have a bowed legged like the photos i have attached of my son? Did anyone NOT choose amputation? I am feeeling so torn on what is the "right" descion to make. We plan to fly to Dr.Plaey to get a second opinion, but my heart feels like ampuation would give him the best chance for an active childhood, with out many surgeries. Thanks all

Jenna

My daughter's right leg

My daughter's right leg looks almost the same as your son's left leg. We are meeting with doctors this week to discuss her MRI results, but as far as I know amputation is our only option. I'm curious, have you been told that leg lengthening is an option? My husband and I were very torn too, when we thought we would have to make a decision between the two. We met with two different leg lengthening doctors and both said that they would not do the surgery. When do you plan to meet with Dr. Plaey? I still worry sometimes, if we are making the right choice.

We see Dr.Mosca at Childrens

We see Dr.Mosca at Childrens in Seattle. I always leave with unanswered questions, I guess it is so much info to take in. He said that there was one option but if it was his child he wouldnt have it done. He said that with out a tibia the leg cant support the weight and most of the time needs to be amputated later(like around 12yearsold) I plan to see Dr.Paley this fall,(I need to call) but my husband and I dont want to do any lenghting. So that doesnt leave any options. I guess I hjust need to hear from 1 more person that the leg cant be saved so when LOgan asks why we chose this outcome, we can say we did everything we could. Logan will never know the difference and will be able to enjoy his life, and play sports. If we do lenghing he will spend his days at childrens, going through surgery after surgery and recovering. Everyday,I am thankful for my son, but still have a hard time accepting this outcome. We do plan to amputate.Are you close to the surgery, how old is your baby?

Ooops i forgot to say......

WHAT A CUTIE!!!

Isn't he gorgeous :)

X

ask lots of questions

I was in exactly the same position as you both this time last year and i remember the anguish. Our daughter Jess has bilateral PFFD class D and lengthening wasn't an option for her because of her tiny femur, she also had no knee, no hip, no fibula and no ankle. We opted for amputation because her feet were causing discomfort and in the long term couldn't support her. She wears bilateral prosthesis which is definately challenging but she is amazing and sooooo resiliant. Every week she gets stronger and better balanced. Technology is developing so quickly and prosthetics have improved so much that there are lots of options.

The physio and I are taking her ice-skating (legs on) tomorrow for the first time to help her with her balance and motion. I know it sounds crazy but we'll never know unless we try. It might work it might not, we'll have to wait and see.......

I remember walking in to see the doctor with a notepad and pen and pages of questions, i wrote down whatever i could think of. I also read lots of stories on the net about people who had had amputation, both adults and children. Most adults i read about seemed to understand that their parents made the best decision they could. He won't hold it against you. I'm on the other side of it now and life still has GREAT challenges but as far as i can tell the worst is over. And we're looking ahead. Let us know how things go. Jo X

Comment viewing options

Select your preferred way to display the comments and click "Save settings" to activate your changes.