Are there any parents on this board that have a child with a short femur. I have a one year old with a congenital short femur that will require multiple leg lengthening surgeries to correct. I'd love to develop a support system with other parents going through this as well. I would also greatly appreciate any advice from parents who have already been through a leg lengthening procedure.
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short femur
(25 posts)
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redmom
MemberPosted 1 year ago # -
blueberry
MemberIt seems like there are some... Maybe they haven't checked the group in awhile. Have you tried checking any other boards? You could try sammysfriends.org. I don't know if there's anyone there but i think it would be worth a shot.
Posted 1 year ago # -
I have not talked with parents who have had limb lengthening surgery, but our program has a network of parents who may have been in similar situations. There is also a group for PFFD that may have some more folks on it to talk with: http://www.pffd.org/
Posted 1 year ago # -
redmom
MemberThanks for the reply and the other websites.
Posted 1 year ago # -
cary
MemberHello Redmom
I have just 'stumbled' across this site when ( with a few minutes spare in the office) I decided to throw a question at google in case (the right) answer came up. It hasn't given me the answer I was looking for - rather exposed me to the reality others are facing, and I hope I can help, or at least give some comfort. My situation is this : I was born with a short left leg (about 2inches), flat left foot and three toes on that foot. I was lucky in that my parents very early referred me to a medical specialist ( and apart from that never gave me any preferential treatment over the rest of the family) and the result is I have worn hand made shoes ( with a carefully designed build on the left foot )all my life - and no related operations of any kind. Of course walking any distance without shoes is not very comfortable, however, with shoes I have done everything from holding my school's under 15 high jump record to coming in the top 30% in 10 kilometre runs, to cliff climbing to long distance biking and swimming and skin/scuba diving ( without the shoes !)A-grade level squash competitions, and ( currently) playing soccer with my 15 yr old. I probably have gone over the top to prove a point to friends that I was as good physically as they were - and interestingly am now probably fitter than most of them because I am still doing most of above, and they can't!. I will be 60 this year. My point - I know medical procedures are advancing all the time, and the operation you are considering will no doubt be a success, but either way if junior is given half a chance he/she can compensate for and beat what you might see at the moment as a 'handicap'.On a philosophical note, while I occasionally get frustrated with the limits of walking in bare feet, I have never resented that I don't have normal feet, and in fact sometimes wonder whether this wasn't some sort of life challenge or lesson set for me, because it certainly has taught me to appreciate what you have and can do, and wonder why others don't appreciate that in themselves more.
best wishes
CaryPosted 1 year ago # -
pursuejesus
MemberMy daughter was born 3 weeks ago, and her left femur is shorter than her right. At this point, the doctor thinks her left hip socket may not be fully formed, but he couldn't tell much from her x-rays because she is so little. He said that depending on her hip, she may or may not be a candidate for bone lengthening. We are currently in the process of seeking other medical opinions/options.
If you'd like to chat, let me know! Here in PA there is a Parent to Parent group that matches parents whose children have a similar condition. I've already spoken with 2 other moms whose child has a limb deficiency and they have been very helpful in sharing their experiences. The website is www.parenttoparent.org. They may be able to help or you may find something similar in your state if you are not from PA.
Posted 1 year ago # -
redmom
MemberThank you so much for the post and congratulation on the birth of your daughter. We are from IA and we do not have a parent to parent network that I know of. I wish we did! We have known that our son had a short femur since our 20 week ultrasound. However, they weren't able to tell us about is hip until we had a MRI at 1 year. He currently has a 4 cm discrepancy and is walking great with or without his shoe lift. However, we are anticipating a 6 inch discrepancy by adulthood. I can tell that he is constantly adjusting to the changing lengths between his legs and I'm fearful of the day that a shoe lift will not be enough. He is the kind of boy that does not like anything to slow him down. I'd like to continue our chat and hopefully find other parents in the same situation. I find sharing experiences and support very helpful.
It is also our sons left femur and he was born with a 1 cm discrepancy.
Posted 1 year ago # -
pursuejesus
MemberIt's good to hear that your son is able to walk. And I understand your worry about needing more than a shoe lift as I have that same worry. Right now my daughter has an inch and a half difference in her leg lengths. (She's one month old today!) The doctors seem to think that the size difference will grow as she gets older, but the overall ratio will stay the same. They seem to think that her left leg will be as long as the mid calf point of her right leg. However, I suppose it's too early to really tell for sure. I hate all of this waiting...not knowing how long her leg will grow, if she'll be able to walk, what treatment options she will have, etc. But it has been good to connect with other parents who are going through the same thing.
Posted 1 year ago # -
redmom
MemberWaiting and not knowing what the future will be is the hardest part. I have to say that during the first year I began to forget about my sons leg. It wasn't until he started to crawl and pull up that it hit me like a ton of bricks. We've been fortunate that our sons hip and knee are in good shape. However, we did not know that until last month when he had an MRI. Now I keep reminding myself that he will have two functional legs when he is an adult and adulthood last a lot longer than childhood. We also have a 2 year old and my primary focus is how do I make their childhood as normal as possible. I am beginning to read as much as I can about leg lengthening procedures to better prepare myself for what is to come and how best to prepare our home and our family. I've also begun to look into medicaid for our son. We spent $5000 in medical bills last year and I concerned about future medical cost. My advice to you at this point is to find a doctor that you trust and has treated other children with congenital short femurs. Enjoy the first sleepless year when it really doesn't matter what length her legs are. She is just going to kick you with them anyway.
Posted 1 year ago # -
Anne Conway
MemberHi
Can anyone help me. We have just had our baby daughter and there is a major difference between the normal right leg and the short left one. She is still undergoing xrays and examinations. We have never heard about this before and it has kinda over-whelmed us. The doctor first came in and said she had no femer as this was the difference. The next doctor said there is a shortened of the femer and said more tests need to be done. I dont understand the condition, the possible causes or the consequences.Posted 1 year ago # -
Iamom
MemberRedmom,
I am not going to be all that much help to you but you could potential be of help for me. :) I am also in Iowa and I am currently 32 weeks pregnant. We found out at my 20 week ultrasound that my daughter's left femur was measuring short. As she continues to grow and develop, we know that her whole left leg is running behind (although growth does continue). There is a possibility that her left hip is not completely formed as well but the orthopedic surgeon said he won't know for sure until she is here and they can do a full ultrasound on her. There is nothing else wrong with her that they have found at this point. I just wanted you to know that someone else in Iowa is going through a similar situation. I must agree with you that all this 'waiting' is the toughest part. I want the answers now and I just can't get them. Have you been seeing a pediatric ortho doc at this point? Just wondering what they are telling you if you have.Posted 1 year ago # -
redmom
MemberIamom
Your story sounds almost exactly like mine. We had ultrasounds until my son was born. He continued to measure about 1 cm difference between the two femurs and they could tell us very little about the hip.
We have been seeing Dr. Lindaman in West Des Moines since I was 23 weeks pregnant. He is a pediatric orthopedic surgeon who does leg lengthening. My son is now 14 months and we see Dr. Lindaman every six months. If you'd like to chat let me know. I'd gladly share what I've learned so far and what resources I've found in Iowa. We are currently in the process of getting a second opinion from Dr. Paley.
Try to relax and enjoy the rest of your pregnancy. Please let me know when you deliver!
Posted 1 year ago # -
redmom
MemberAnne Conway
I would recommend that you find a pediatric orthopedic doctor in you area. They will have the best answers for you. Keep us posted.
Posted 1 year ago # -
jade_dlove
MemberHi! I just had my son 10 days ago, and he has a short femur on the right side. We found out about it at my 20 week ultrasound and so have had the time to get used to it before he came. His femur measures about 5 c, (2 inches) shorter than his left leg. I am being referred to a pediatric orthopedic surgeon, but right now am very scared too as to what the future holds for him. From my research leimb lengthening really isn't done here in Canada. I'm just looking for support and friendship from those struggling and dealing with the same condition.
Posted 1 year ago # -
Yshin
Memberjade_dlove
Congratulations on your baby's arrival!I don't know where in Canada you are, but this might help.
I'm in Vancouver and have been seeing an orthopedic surgeon at BC Children's (Dr. Cindy Verchere)for my daughter's condition (she has a radial club hand). I think they do leg lengthening there but not necessarily with Dr. Verchere.
Good luck and don't be scared. I know it's nerve-wracking right now but you'll see that your child can be so much more than you can imagine. :)
Yuki
Posted 1 year ago #
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