March 30, 2008,
H.D. asks from Santa Clara, CA on March 22, 2008
Seeking Other Mom of Child with Clubfoot
My son was born in 2004 with bilateral clubfoot. He has casting for his first 11 months of life, two surgeries, and still wears a brace and receives physical therapy. Wondering if there is anyone else out there with a child born with this birth defect? I would love to chat!
1 mom found this helpful
So What Happened?™
Thanks to all the responses I received, more than 20 of you have either a)had clubfoot yourself b)had a family member with it or are c)a mom to a child with the birth defect. I received responses from a mom caring for a 2 month old daughter with clubfoot all the way up to a 50+ year old woman who was diagnosed with it as a child. And lots in between too, moms of toddlers, teens, young adults. I guess what I take from all of your stories is that every story is unique, just as all of you are. Some had horrible experiences and still have problems with muscle tone and limping. Others are as good as new and accomplished athletes. I just don't know what to expect from my son's disorder in the future. . . But that is what being a mother is all about, isn't it? Thanks for giving me this perspective, ladies.
S.B. answers from San Francisco on March 23, 2008
I was born with bilateral club feet in 1965, did the casting as a toddler then braces, then surgery as a teenager. I also wore a Milwaukee brace for kyphoscoliois, which I think is commonly associated with club feet. You might want to check out Yahoo Groups, there are parent groups for almost every birth defect imaginable. I am an active member of several groups due to some issues my middle daughter was born with.
M.B. answers from San Francisco on March 25, 2008
I recommend checking out hipbaby.org web site and joining that message board, many babies who have hip dysplasia also have club foot, so you might meet some people there. My baby has hip dysplasia and the site has been really helpful.
A.F. answers from Yuba City on March 25, 2008
My name is A.. My daughter was diagnosed with Bilateral Clubfoot (an EXTREME case) when I was only 20 weeks pregnant. She was born February 7th of this year and was immediately casted when she was only a week old. We are actually going to Sutter Memorial today for her surgery on her feet. She will then be casted for 3 weeks and then... NO MORE CASTS! Then she'll wear the booties. Just wanted to let you know that you are not the only one out there dealing with this!! Send me a message sometime if you'd like to chat about it. It was very tough in the beginning for me, but things have gotten better. I hope things are going ok for you and your son!
D.C. answers from San Francisco on March 23, 2008
My son was born in 2006 and had a cast for the first 8 months and has had one surgery. I was told he is going to need casting again because his foot still turns in and he falls a lot. I notice he has low muscle tone in his leg , but I'm not sure if it is from being in the cast for so long. He was born two months premature and is about two months behind, other than that he is doing fine. Now I am wondering how is he going to continue to walk if he has a cast.
I am a stay at home mom with five children.
L.B. answers from San Francisco on March 25, 2008
My daughter, now 16, was born with a club foot. Casting did not work. She had surgery at 4 months, and complications afterwards. She wore orthopedic shoes for years. She would not wear the metal bar in between, so we gave up.
She wears a lift in her shoe on the side with the club foot as that leg is shorter (shorter tibia, smaller calf muscle are part of the syndrome). She runs cross country and is on her high school track team. She has also played a lot of soccer. She does have problems with her ankle, mainly pain, but deals with it, and the orthopedist says its OK for her to run. That's good, since she loves it!
If I remember correctly, Kristi Yamaguchi had a club foot, also.
My daughter had a club foot only on one side, which must be easier than having both legs involved like your son, but as you can see, as she grew, it became less of an important feature in her life, and she certainly is not letting it define her.
Good luck to you and your son.
L.A. answers from San Francisco on March 23, 2008
Try contacting Parents Helping Parents [PHP]. The staff in the family resource dept can search their database for another parent for you to connect with.
The number is ###-###-#### and their office is in Santa Clara.
It's called a mentor parent match. They can search by age of the child and disability.
J.H. answers from San Francisco on March 25, 2008
My now 9 month old son is clubfooted. He was in casts for the first four months and is now in braces. We have a hard time with his braces. His right foot slips out all the time especially when he sleeps. We even had to get a new brace, but it still slips out. Did you ever have this problem? If so any advice. We go back to the Shriners in April. The doctor says there is not much more they can do to keep the brace on and it is up to us to find a solution.
We also have two other children 8 year old daughter and 5 year old son, born with out clubfeet.
S.S. answers from San Francisco on March 28, 2008
I adopted my son at birth with severe club feet (he had both of them) in Nov. of 2005. He had several different casts right from the start and a minor surgery. He now still wears the shoes at night. He is doing great and we have an excellent dr at Kaiser who is known throughout california for his work with babies and club feet. Let me know if you have any questions. I would be happy to share my experiences.