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.
L.A. answers from San Francisco on March 23, 2008
I was born with club feet (yes both) along with twisted shin bones, in 1951. As I am told, I wore braces (shoes connected by a metal bar) for about my first two years. They were on most of the time until I began walking a little past 1 year, then every night, all night. There was no surgery for this in the 1950's. My right foot is still a little pigeon toed (hardly noticeable), but I've had no other problems that can be correlated with the club feet. I don't know if this information is what you were looking for, but hopefully it gives you hope that all will be well. I realize every case is different, but technology and science have come a long way in 56+ years and I would expect your son's outcome to be excellent.
M.H. answers from San Francisco on March 27, 2008
My daughter was also born with bilateral clubfoot. She will be two in May, she just recently got her casts off. She has had a couple surgeries and has been in and out of casts since she was born. Now she has some shoes she wears at night, I'm not sure how well they are working though, because I think her feet are starting to turn in again. It's a hard fight. Is your son walking ok? At what age did he start walking?
M.B. answers from San Francisco on March 26, 2008
I am also a teacher and mother of 3. My oldest son was also born with a clubfoot. He had surgery at 6 weeks of age, lots of physical therapy, wore special shoes (with a bar at night) and wore casts for the first 4 months of his life. We always said it gave him an advantage because he rolled over so early!! The doctor said he might walk late but he walked at 9 months!!! Sometimes people would stare and ask if he broke his leg! The special shoes continued for about 4 years but he could outrun all of his friends! He is now 25, strong, and healthy. He always participated in sports. He does however have a slightly thinner calf and a smaller foot on his clubfoot side. He was one of the first babies that received help from day one. They used to wait awhile before treatment. I am sure your son will be fine. Best of luck!
J.S. answers from San Francisco on March 30, 2008
My son was just born in December 2007 with bilateral club foot. He was casted at 3 days old and was in his casts for about 7 or 8 weeks. He had only one procedure to cut his achilles tendon so his foot would drop into the normal position. Now for the last 2 months we have been dealing with the shoes that have the bar between them. He wears these shoes 23hours a day and once a day I give him an hour of kick time and boy does he love it! One more month of that they say and then we go to just wearing shoes nights and naps they say until he is 4 years old. I would love to chat with you more about this.
S.L. answers from San Francisco on March 24, 2008
Over 40 years ago my brother was born with bilateral clubfoot and he was casted and had surgery. He did wear braces when he was younger and developing. Although he has some minor issues with his feet now all is great 40 years later. I don't have direct mother experience with this so I know it must be very stressful. I'm praying for you. Thought you might want to hear though about how things can go looking ahead.