my son was born with bilateral clubfeet. he is now 17 years old and doing well!

Dianne - posted on 09/06/2009 ( 2 moms have responded )

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hello to all you moms!
after reading all your stories i felt compelled to tell my sons story, if only to encourage all of you to hang in there! my son was born in 1992 w/ bilateral clubfeet. we were not aware of this before his birth. my husband was also born with a clubfoot back in the 60's. his was severe (completely backwards) and required surgeries to correct the bones as well as the tendons. he is now an avid golfer and also skis. when my son was born, they told us it was most likely hereditary (tho he was a large baby as well...almost nine pounds). i took him home from the hospital in two full length casts. for the next four months of his life he wore these casts....soaked off in the tub every sunday night and replaced every monday. at four months he had heel cord surgeries on both feet a week apart. they also stretched the tendons in the arches of his feet. he wore casts for six weeks after the surgeries and then wore the dennis brown brace (with the bar) for months. he has had several surgeries over the years (more on his left because it was more severe) with follow up casts and crutches....up until the age of ten. he was seen by a pediatric orthopedic surgery every six months throughout his life. he has had numerous stretching (walking) casts to prevent relapse and all sorts of boots and braces. we have been through it all and i am here to tell you that you and your children can get through it! as someone said, kids are adaptable. my son learned to walk by 12 months. he has never let it stop him from doing anything. he has played all kinds of sports over the years, including high school basketball, track and cross country. and he is actually a really good athlete overall. my fondest memory is of him playing little league baseball in a walking cast!!! he was always admired by his teammates. the main issue over the years has been that he walked on his toes (so keep your eye out for this). his pediatric dr. hesitated to do more corrective surgeries because he knew how involved he was in sports and he wanted him to go through his growth spurt, and any surgeries on the heel cord (especially) only weakens it further. because of his toe-walking he started having pain issues (in high school) when he overdid it athletically. unfortunately his longtime doctor retired, so we were left not knowing what to do next. we knew something had to be done, because he had been walking improperly all of his life, and it was starting to cause him foot pain and hip pain. we figured that the older he got, the more issues he would have with his joints in general. ironically, one of his best friends father is an orthopedic surgeon and he referred us to one of his partners who is a foot and ankle specialist...and who was born with a clubfoot himself. so just this summer, my son underwent two surgeries (six weeks apart). he is still in a cast on his right foot and wears a boot only at night on his left. they did both heel cords and did soft tissue work on the tops of his feet and on the arch tendons. they also took wedges out of the cuniforms on his left foot (three round bones equivalent to the wrist bones at the top of the ankles). i can't tell you what a crappy summer it has been for a 17-yr. old. pain, crutches, inactivity, difficulty showering etc...but he has handled it all like a trooper and his friends have been very supportive and kept him entertained. he starts school on tuesday and is still in the cast on his right foot for two more weeks, so he will have to crutch it a bit longer. he is putting weight on both feet and all in all is doing remarkably well! we are hoping this will be it for him. i can't tell you how wonderful his left foot looks...despite the scars it finally looks like a normal foot with all the right contours and best of all, flat on the ground! it's still a wide foot (but one advantage of having two clubfeet is that your feet are the same size;-) my husband still struggles with buying shoes because his clubfoot is a half size smaller. anyway, we are sooo happy with the results! once he gets the other cast off, he may need to learn to walk all over again and i imagine his equillibrium will be off a bit, but i know everything will be fine eventually! his goal is to be running track by next spring! for now, he is helping to manage the cross country team and looking forward to his senior year. at any rate, i have babbled on long enough. i just hope my experiences can be of some help. just know that you are not alone and if any of you have any questions about anything, i would be happy to answer them if i can. i wish you all of you the best. and as i said before, hang in there....it does get easier.
sincerely,
dianne martin

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Cherish - posted on 06/09/2010

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Our now 7 yr. old was diagnosed at my 6mos. pregnancy exam with bilateral clubfoot. When he was born, the bottoms of his feet faced his bottom. He was casted at 3 days old for at least 8 wks. This continued off and on until he was 8 mos. when he had his first surgery. He was a late walker...actually pulled himself up to stand for the 1st time the night before his 1st surgeries. Boy did we feel like we were taking his legs right out from under him!! When he started walking at 14 mos., I just bawled and laughed. We had waited longer for him to walk than we had for him to be born...and he was 2 weeks overdue, LOL! He had his second set of surgeries at almost 2, and more castings after that. He's always loved going on walks, so that was what we did. Almost every night, sometimes for miles. We'd leave it up to him how long he wanted to go. He hadn't any phys. therapy until age 5, mostly because we were concerned with his balance (due to tightness in his ankles) and he didn't walk down stairs with alternating feet. All told he has had 8 surgeries (if you count knocking him out for cast changes-post-op-and pin removal), 28 weeks of casts, and 14 weeks (2x a week) of therapy. We have found him an absoluely fabulous dr. who has children similar in age. He has been as proactive as we could hope...no "let's wait and see" stuff. His goal and ours has always been #1. We want him able to walk when he is ready to try, and #2. We want him to have a fighting chance of keeping up with other boys his own age. So far, this is exactly what has happened. There might be more surgeries in the future, especially if he goes thru some crazy growth spurts, but the only evidence that he has ever had a problem is his skinny legs (we can also blame this on Daddy's genes, LOL!) and scars. He still doesn't come down on his heels like he should, but with our summer activity level and phys. therapy again in the winter, we are confident that he will excel. Thank you ladies, for your continuing words of encouragment.

Jan - posted on 10/08/2009

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Wow Dianne, your story almost mirrors mine. Adam is now 19 years old. He too was born with bilateral talipes (very acute). He had several ops, peidro boots, calipers, night splints...the list goes on. But Adam went on to play rugby, football, he even became a brown belt (3 tag) in karate, something we thought he'd never achieve when I gave birth to him!! His latest sport is boxing. Adam does still have problems with his feet but we cope when they arise & he is still smiling!! All the best. x

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