Pregnant with son with unilateral pffd, fibular hemimelia, and club foot

I am currently 6 months pregnant with a boy. His right femur is half the length of his left femur. He only has one bone in his lower leg, and club foot on both feet. My doctor here in Tulsa has never seen anything like this and doesn't know what to say but "let's wait and see". I have two other children (age seven and four), and every time I see them running, jumping, or climbing, I wonder if my youngest will ever do those things. I haven't told anyone about his condition except my husband. I don't think either of my parents will handle it well. My mom has told me on several occasions that she would rather die than have an ambutation so I can't imagine discussing the possibility of amputating my son's leg with her. I want to learn as much as possible about my son's conditions before he is born so I'm fully prepared. My husband works and I stay home with the kids, my other son has a light form of autism and is developmently delayed so I take him to many appointments. I self taught myself about his condition and have worked with him with many techniques and he is doing well. I have not dealt with a physical disability and I'm not sure what I can do to help this one except learn about every treatment and choose the right one. We just bought a house and do not make a lot of money so i'm not sure how we can afford any treatment not covered by insurance. It looks as if i will have to travel far away from Tulsa for treatment which concerns me as i am the primary caretaker for my other two children. I am interested in talking with other parents going through a similar situation and see how they feel about the treatment they chose. Also I would like to talk to young adults with this condition and see how they feel about their parents medical decisions. Any information is helpful.

Comments

he'll do great!

Congrats on the birth of your son! He's exactly one year younger than my son Lucas. He's unilatteral pffd and fibular hemamilia (I can never spell that one!) on the left side. I was worried about him until he started crawling, and then pulling himself up and then walking! He was fitted with a step-in non conventional prothesis at 8 months when he was getting ready to start pulling himself up on the furniture. We are onto the second one now as he's growing like a weed. We call his prosthetic his "helper leg". He can walk with it on or off (he has about a 3-4 inch difference right now). I'm amazed at his perseverance and how he just adapts. You will be suprised how much he will be able to do.

We started physio when he was 8 months old too. A lot of it can just be done at home. We do some foot stretches on the left foot to help stretch out the heel cord (his foot turns out a lot to the left) and we encourage him to stand on his little leg by placing his foot on our thigh while he's standing at a bench playing with something. The big thing for these kids is alignment. They need to learn how to stand nice and tall and keep ankles, knees, hips, spine all in a nice long straight line. When your son gets to walking stage pull toys help add resistance and help with balance, a piece of tape on the floor to visually step over, having to stand and reach up for a toy above his head (that you're holding) gets him to strech up. Encourage him to climb stairs. This all is done while he is wearing his helper leg.

For treatments we're still waiting to make a decision. We are going the function over beauty route and will likely only do stretching if it will help with something like lining his knees up to the same height. We are really happy with the helper leg. If you (or anyone else) has questions or would like to see pictures or video please contact me.

Best wishes!

Shannon
Saskatoon, Canada
s . floer @ sasktel . net (without spaces!)

Had my son!

My son was born on July 2. He is beautiful with brown eyes and dark hair. His femur looks about half the size of the typical leg and he has fibular hemimelia. He does not have club foot but he is missing one of his toes. I'm still on the fence about ambutation or lengthening but I will be getting several opinions before I malke my decision. Right now I'm just going to love and get to know my newest son. I started a caringbrigde blog for him with pictures of him if anyone is interested.

www.caringbridge.org/visit/oscarmateo

congrats

Hello, congratulations on your little boy. I too have unilateral pffd, my foo.5 is intact and I have about an 8 inch discrepency. I wear a 10 inch shoe lift, I have had three surgeries. One to place my hip in the socket and get 1.5 inch lengthening to see how my leg could handle it. And one to place staples on my normal lenghnleg to prevent the difference from becoming any greater. My mom struggled when I was younger on finding a doctor who was willing to offer an alternative to amputation because in the 80s there were next to know doctors who knew anything about pffd. I made the decision at 12 that lengthening surgery was not for me, I had already been wearing a shoe lift since I was 2 that lengthening surgery is only a cosmetic fix for me. I'm glad that my mom gave me the chance to make ge decision myself, fortunately for me my case wasn't as severe as others. But I encourage you to look into all of your options and wish you and your family lots of luck.

Congrats!!

Wonderful news!!

Your son's leg sounds very similar to my daughter's leg. She is now 8 years old. If you ever want to ask any questions, just email me at "beth reinert @ yahoo .com". (just remove the spaces)

Beth

P.S.

YES!!! Your child will run, jump and climb..... you will be amazed by his strength and perseverance. God has given our kids extra doses of these traits! :)

A fellow Tulsa girl

I grew up in Jenks and we live in Dallas. Similar to your journey, I was 26 weeks pregnant when I found out my unborn child had a short femur. January 14, 2008 is a day that will never be forgotten - the day the perinatologist saw the discrepancy. My daughter has been through hip and knee surgery with Dr. Paley and just finished her first lengthening. Please contact me, I'd love to visit with you! jenniferbethscott@hotmail.com.

Us too except bilateral

My son has the same thing except that his is bilateral. He has PFFD and fibular hemimelia, so is missing his fibular in both legs and when he was born he had a club foot with his left foot.

My son now is 6 years old and wears AFO's on both legs. Those are braces that help strengthen his legs to walk. He plays soccer and at the age of 6 months had surgery to correct his club foot. He is quite shorter than most of the other kids his age, but none of this kept him from crawling, walking or running or making friends. Our doctors tell us that he is unique because his condition is bilateral.

We know that in the future there will probably be amputations but as of right now he is getting around just fine as he is and so we aren't to worried at this point in time. We also have the family who doesn't want amputation of any sort either. I just roll my eyes at them.

I could go into tons more details but it might overwhelm you. If you want to talk shoot me an email and we can talk. emilyguerraatgmaildotcom

Emily

Ponsetti method for club feet (non surgical)

The gold standard for club feet is the Ponseti Method which was developed at the University of Iowa ( http://en.wikipedia.org/wiki/Ponseti_method )

I would recommend talking to the shriners hospital. We went to the one in Chicago and found them an excellent resource, even though we opted for a non-surgical path and didn't require their services.

We opted for a non-surgical approach but our child has a complete bone structure from the knee on down. The bone structure will really guide your options.

Adult PFFD

I live south of Joplin, MO and I am an adult with PFFD. You might look for specialists in the Wichita area and the KC area. However, as a last resort Dallas, TX definately should have a specialist to help. I was treated in the St. Louis area, but they are not up on the latest procedures in my opinion. Insurance will cover most costs and programs such as hospital grants and Children's Miracle Network can help fill in any gaps in coverage. PFFD is not my only disability as I also have short arms and only part of one hand, but the disabilities focus me rather than limit me. I have 10 wonderful kids, college degrees, own a small business and have no regrets that I was born this way. My into blog on here explains more, but please feel free to ask me anything. Like most adults on here, we are happy to share any information that might be helpful to you.

Questions

What treatments did your parents do for you while you were young and how do you feel about their choices for you now that you are an adult? I fear making the wrong choices for my son and he will not like my decisions when he is older. Right now the way I see it I have three choices:
Try and lengthen his leg with multiple surgeries, painful lenghting, and travel which means being away from his family for months.
Amputate his leg while he is young and get a prosthesis.
Or wait until he is older and let him make the decision himself.

I will treat his his club foot right away but I have to see how severe his leg is to make any other decisions. My c-section is going to be late June and they won't tell me anymore until he is born. I just want to do what he would want me to do. Unfortunatly, there is no way for me to know for sure. Any thoughts?

I did find a doctor here that will help me. He moved here a year ago and works at Tulsa's largest hospital where I will deliver. I think I will get several second opinions though. If I go through Shriners, they will send me to Shreveport, LA but I guess I could request another location.

How do I get to your blog? I can't seem to navigate this site very well.

pffd

Hi.

My daughter is 7 years old. When she was born her left femur was half the length of her right, she was missing the small bone in her lower left leg, her left foot turned out to the side, and both her left knee and left hip would not straighten out of a bent position. She has undergone lots of various treatments over the years on her leg. But find comfort in knowing, that even though she's been through a lot, she is very happy and has more energy than I ever had. She has many friends and does well in school.

Your son's leg is something that he will have to deal with and you and he will have to figure out different ways to do certain things, but it DOES NOT define him. He is your son who happens to have leg issues. Just like autism is not who your other child is. It's just a part of him.

I would be happy to correspond with you by email if you would like. My email is "beth reinert @ yahoo. com" (just take out the spaces.)

Beth

Comment viewing options

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