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So glad i found this site! I was born in ’92, with both feet being club. Had surgery as a baby and am now really suffering with it as an adult. It’s great to finally find an active community with adult sufferers that I can talk to.
Hi there! I found you because I’m a 46 year old living with a corrected clubfoot. I didn’t know for sure that clubfoot was the source of my problem until this year, because my parents didn’t tell me; I guessed and my mother affirmed my guess. My ankle and arch have always bothered me, and the older I get, the more it does. I have searched the internet for management of overcorrected (or mildly overcorrected, or just not perfectly corrected?) clubfoot through physiotheraphy or other nonsurgical means and can find nothing. I do yoga and hope it will make a difference, but really want to find an evidence-based, non-surgical approach to maximizing ankle movement range and improving arch strength. Does anyone know anything? Thank you!
My daughter Mari was born in March 2000 she is a teenager now her first operation was when she was 11 days old. When she was almost 13 things got worse this has been a nightmare.Thank god i stumbled upon this site. i often wonder how other families our dealing with this on going pain and treatments
I was born with double club foot in 1992, most of my pain through out my life has been from running too much! Specially when I was in my mid teens when I was very active with rugby and other sports! When I got to around the age of 19. I decided to give up sports with excessive running, since then I have kept doing exercises, such as going to gym. And my pain has literally gone from having to deal with pain every day, too only having to deal with it twice a week at most! Hope this helps anyone.
I was born with bilateral club feet an I can’t find shoes that will fit my feet an still make me feel like a lady where can I find wide width shoes5 an a half with a width of at least 5 Es eeeee pls if you have any web sites that I’ can go to share them with me I’ve been to so many an yet can’t find any pls help
I was born in 2002 with club foot. While I’m only 13 my leg and foot are in great condition I’ve had surgery done many times and boots, casts and pretty much everything. My leg is fully straight but my calf muscle is very small and in a couple years I should be able to get plastic surgery to make it thr same size as me other one. I still go to physio every couple of months to check everything is okay and go to my doctor every year.
My 9 year old has bilateral club feet. He’s had many surgeries throughout his fairly short life. His feet must have been pretty severe at birth, and I know they are a bit of a consternation to his orthopedic surgeon and orthotist. His feet hurt a lot, but his doctor wants him to grow more before she starts fusing bones in his feet. He LOVES swimming, but it’s VERY difficult for him to walk at the pool. He walks on the sides of his feet; so he goes through water shoes pretty quickly. We tried Dawgs, but they hurt his feet because they come up higher than water shoes. His orthotist suggested wearing old DAFO’s, but he refused to do that; he doesn’t want people to perceive him as different. If anyone has any solutions to the pool, I’d love to hear them!
My husband who will be 43 in this month was born with bilateral clubfoot. He has found some hope that I thought I’d share after reading many of the post. He contacted The Hanger Clinic in Gig Harbor, Washington. They have a brace that many adults with clubfoot have discovered offer a new lease on life. We are in the process of raising funds for him to get them. Ryan and his team review each person to see if the device will benefit them. I hope this can help someone else. We are posting our information on social media using the #JimsBionicLegBraces, if you want to follow his journey. We are hoping to go to Washington next month.
I have been struggling with club feet all my life. I was born in 1958 and have pain everyday. I’m mostly struggling with finding shoes that I can wear. Mainly boots, for riding. I have had several surgeries also, and now have absolutely no movement in my right foot. My ortho doc. fused my ankle bone and leg bone together because of no cartilage. Bone on bone rubbing. Very painful. Now my foot wants/feels like I should crack it to relieve the pressure and swelling. Life goes on. I’m thankful that I have been able to walk this long.
Yes! i had multiple surgeries for talipes (l) as a child. Now 39 yrs old and have hip back and knee issues. I have always been very active so i think a lot of the pain experienced is down to altered and inefficient biomechanics caused by the talipes.
I was born with bilateral clubfoot in 1987 and my son, born in 2014, was also. While pregnant, this was something I worried about constantly. Both my son and I had surgery before 1 and we both wore casts for 10 weeks and special boots. My left foot is always stiff; however, thankfully, my son has full range of motion on both his feet. I was inspired to write and illustrate a children’s book for all children born with clubfoot. It is called “miracle shoes.” It is an inspirational book that shows babies born with clubfoot can be whatever they want to be. It helps parents, kids and siblings cope with this difficult process. Please visit my website it’s miracleshoesbook.com.
My daughter Ivy Beau was born with talapis in the right foot we have just started the boots and bar 3 month process after many set backs. Finding night times very hard getting her to sleep through like she use to its really upsetting. Ivy is 4 months old and is great during the day lifts her legs high and chatting away but night time she just can’t get comfortable. With a 4 year child as well and being a lone parent this whole process is very upsetting I can’t wait to get past the 23hrs a day!…I am very excited about bathing her this evening as you can’t with the cast’s on. To think club foot is related to more serious problems babies can have I feel I need to be grateful but sadly finding life very hard at the moment.
We have a new born after 10 yrs of marriage. When we learnt our baby will have club foot, we were crying. After birth we started casting. After 5 cast , 6th one fell off 3 times , doctor said it will be fine and every time he did cast couple of days after fell off. In those time we saw the foot seems coming back in first place. Again he said it’s ok. This morning I called him that it fell off he said come to tentotomy surgery that scheduled on 2nd may. Last night when checked his leg seems like little bit curved. We are worried if the doctor put casting wrong way that made curved!! If it really ok couple of days without cast??We are now suspicious if the foot will be corrected? If the doctor doing and saying right?
Should we go for second opinion??
Any input will be appreciated.
hello my daughter born with bilateral clubfeet and she is done with casting and tenotomy now I’m looking for someone who can donate shoes and bar for her i already contact our 0rg. and charity here in the philippine but unfortunately they don’t have available shoes and braces for her
my son has a clubfoot(rightside)only. We had it operated when he was 8 mos. old and due to financial shortage, we haven’t continue his therapy after surgery. Now he can walk but unfortunately, i’ve noticed that his calf is smaller than the normal one,then it’s starting to relapse again. I just would like to ask for your help/ expertise on what to do for it.
In Dublin where I live I’ve qualified for free physio in Ireland’s children hostipal. Money can be hard but having club foot it’s so important to really try.
Has anyone experience hip issues in adulthood due to complications from clubfoot? I’m having some mild aching and pain which also feels like I’m losing circulation in my leg
Thank you for all the stories, thank you for the hope and inspiration I feel today! I was very touched to know that I am not alone…Sincerely Kelli Palmiter I am 49 and I suffer from severe bilateral club foot.
Pls my 14 month daughter was born with bilateral club feet. We started the correction at 4days but she can’t stand let alone walk. Pls how long those it for kids with club feet to walk? Am in Nigeria, there is no hospital or shoe company producing the shoes for clubfeet kids. The club foot kids are left to their fate in Nigeria. Pls I need one for my daughter.
It isn’t unusual for children, even those without clubfeet, to walk later than 14 months. Evan was 19 months old before he started walking.
Visit this listing for Doctors in Nigeria – http://www.ponseti.info/ponseti-doctors-by-location.html Some of them even provide email addresses.
I hope this helps
My daughter started walking at 17 months. She is now 9 years old and doing well.
I am in Nigeria,my daughter is 15 months old and has been receiving treatment here in Nigeria,orthopaedic Enugu. She’s doing great and has just started standing while holding something. We’r about getting her next shoe size,let me Know if I can b of any help to u. Regards.
I was born in 1971 with bilateral club feet. I’ve just turned 45 and wanted to tell the goods with the bads that I’ve lived with (Not trying to be a hero or a whiner but probably trying to be both). Don’t know my exact medical history but I’ve had several soft tissue surgeries since birth. I have a lot of old scars with limited range of movement on the right ankle but I always felt that I needed to prove I was just as good or better than everyone else. Maybe this stems from a memory from primary gym class running with no shoes or socks and someone saying OMG whats wrong with your feet (seeing fresh red operation scares). I redirected my inner fire to be an award winning high school football player and a black belt in karate. Still I have dealt with arthritis contantly now but refuse to use it as an excuses. I now proudly serve in the Canadian Navy but I still live in pain and wonder about other non-intrusive techniques for Club Feet.
I was born with a sever right club foot. From what I understand my club foot is not typical as most of the tarsals are mis-shapen. As a baby I had the Ponseti procedure, then I had surgery to move my heel over. At 5 I had an Ilizarov and that straightened my foot really well and I wore a brace over time by foot rolled to the outside. I had corrective surgery again at 23. Now a year later I still have a lot of pain, I cannot walk correctly, and my foot is always swollen. I would like to be active outdoors, hike and run like I did at one time. I am considering a lower leg amputation. I would like to know if anyone has considered or done it and how it turned out. I have heard of people with severe foot pain having it done and it let them return to an active life.
This is a great site and so informative. I have two sons who were born with clubfeet. I am including this site in my weekly roundup to connect others to learn more about clubfeet! Cheers!
Hey mate. Yeah i have had no major issues (few back and knee problems) but have struggled a bit with running to achieve targets for specialist positions in law enforcement.
Hello my name is mark. We’ve just had our 4th and she was born with clubfoot. Now of course not covered by insurance asking for any advice on any assistance methods as alone travel just to get to the iwk is about 4 hrs and now undestamding costs of boots and so on is a bit to handle nb Canada
Everything will be covered if you go to Shriners Hospital. I know it is a longer way to travel but I would have travelled anywhere in the World to get the Ponsetti method for Evan if we had only known about it. The picture on the left here http://clubfootclub.org/about/ponseti-checklist/ above the word wrong is of my son. Treatment is much shorter with the Ponsetti method than what we experienced.
Hi im 39 years old and have talipes (left foot). I had surgery in scotland on my foot a couple of times when i was a baby (huge scars to show) did anyone else undergo surgery?
Hello Ben. I am 43 and I had bilateral talipes and corrective surgery when I was 9 in Cambridge. After a few years of physio I was discharged and all was well until about 7 years ago when I developed a lot of pain and also locking and instability in both ankles. I have had arthroscopic surgery in both ankles, injections, surgery on the front of the joint and also adaptive footwear. I have also developed very painful osteoarthritis in both ankles so no looking forward to the next few years
I’m almost 48 and born with clubfoot of right foot. Had 1st, and possibly 2nd surgery, in England when I was born. One surgery, 3rd?, was done in the U. S. Been active all my life, served in the military, and now starting to have issues. Living in Oklahoma at this time and wish I knew of a specialist here.
My son now aged 42 was born with left foot club.
He had his first surgery at six weeks old and was in a plaster to the top of his little leg.bless him.
He wore bars on his feet until he was eleven months old and so excitedly he walked at twelve months At 4 years of age the surgeon decided to operate again and was successful he wore orthopedic boots until he was eleven and also the bar across both feet until that she also. He went into
Plaster at four days old
He’s done lots of wonderful things and is now a dr of philosophy in chemical engineering.He had a wonderful surgeon
My 9 yr. Old son is having tibial tendon transfer surgery soon to hopefully stop his left foot from relapsing any more. He had bilateral clubfeet so they did casting, surgeries, the bar, and braces. I am grateful because I know it could always be worse. I was wondering if other people on here had the bone poking through the outside of the ankles at birth like my son did.
My granddaughter Makayla was born with bilateral club feet. She got casted, had surgery and is supposed to wear braces on her feet at night because she needs more surgery. My daughter Gina and her husband have been extremely irresponsible and allow my granddaughter to not wear the braces. When she was little and at my house I always got her to wear her “dancing shoes,” but at home it was like it was no big deal. She is almost 9 and particularly her right foot is getting worse. We just had a big fight because I fear the consequences if Makayla doesn’t wear her braces. When she runs it is so awkward already. What can I do? Does anyone have a video of the consequences of not doing as much as possible to try to make her feet the best they can be???
All I want to do is say thank you for evolving me means a lot felt all alone my hole life now I can help people with club foot as much as I can
I found this site felt good to hear stories like mine an to give advice know matter what doctors say. I’ve proofed them wrong so can you.
I am 34 and have a severe degenerative form of clubfoot I skateboard bmx parcore hike rockclimb don’t let people tell you different watch videos and come up with your own way of doing things but worry about back problems it’s hard you can have a normal life I’m handicapped and I made all my friends in skateboarding and all out door activities look bad so you have a chance
Wow! I just stumbled upon this site. I was born in 1969 with 2 clubbed feet and 1 twisted leg. My cousin, who is 1 year older had 1 clubbed foot. My parents never really said much to me about it, but I’ve seen pictures. I had shoes that appeared to be on the wrong feet and there was a bar attached to the bottom of both shoes. My mom said they had to keep strapping my feet down tighter and tighter. My cousin had her leg in a cast. We were both delayed in walking due to the cast and brace. I went on to become a varsity cross country runner as well as a track and field runner. I went to the state championships in 10th grade. However, I had extreme shin splints (that took about 10 years to heal) and discovered one leg was longer than the other. After getting a wedge for the short leg, my knee problems went away. Now that I’m 45 I’m having more foot and ankle problems and it never crossed my mind it could be all related. This is fascinating. I will do more research and tell my podiatrist about the club feet. I will also tell my mom that it wasn’t because I was a big baby!
I just stumbled upon this site all forms of clubfoot don’t worry just study videos an come up with own I’d did the same thing for skateboarding.
I was born with both feet club. Being in the hospital a lot at a young age, my mom was always asked who I was she would say you remember her she’s the Crippled one. My beloved mom didn’t know what that did to my self-confidence. Today I have osteoarthritis & can do very little without going into a flare up for a couple days unable to walk. I need to know what type shoes I should be wearing now at 62, and what kind of pain Meds can be taken on a daily basis that is not a narcotic? Thanks.
To CellaD,I, too, was born with both feet club. I, too, get bad days when I get a lot of pain in my feet and I start limping.
I am 76 years old. I find ankle supports help and aid my walking and take some of the pain away!
Tell me how you get on–email: firstname.lastname@example.org
Can someone leave an address where I can mail used braces to Africa? The old ones…..white little boots with laces with a gold bar.
The address can be found here – http://clubfootclub.org/help/donate-orthotics/
Does anyone here know if the adresses listed for donation in Papua New Guniea and Uganda still accept used gear? We have a big box of boots and bars left over from our daughter’s treatment which we would like to donate. Thanks!
Yes Christina the addresses will still accept your boots and bars
Thanks! I’ll get them boxed and shipped asap!
Hello Christina. My daughter now 1year 7 months old. Diagnosed with bilateral clubfoot since birth. The left foot still hard inwardly make her easily fall down or twisted when getting up. I will gladly accept if you can help me with the shoes and bars. I am really appreciate. I wish you and your family well and happy. My emel email@example.com
My son is in 5th grade and has a clubfoot. He is being made fun of at school because his leg and foot are much smaller than the other one. Any suggestions on how to help and support him would be appreciated. Thank you.
Bullying is so awful. I did hear my son respond to someone who teased him about the way he runs “well it’s just a good thing I can run at all”. Kids teased me mercilessly about my curly hair and I lacked self-confidence so it was really hard. Helping him to be strong and confident that he is wonderful the way he is is the best thing you can do. Helping him to prepare for the teasing, to have words ready to respond when things are said may help him.
Hi Erin! I’m sorry this is happening. Hang in there and hugs to you guys. Show him a little bit about Tony Spineto. He’s a clubfoot triathlete. You can friend him on FB and reach out to him. His son also has clubfoot and is around the same age as your son! 🙂
Also, join the many clubfoot Facebook groups: “clubfoot mommas” “clubfoot is treatable” just to name a few…there are tons!
Hi sorry to hear this. Kids can be cruel as they don’t understand try also goggle Steven Gerard a famous footballer who plays for Liverpool and is going to America to play football. Big hug to you guys xx
I was bullied all through elementary, middle, and high school. I’d hear thingsblike peg leg or other crude jokes. Honestly its tough on any kid. There isn’t any solution. The best way to handle it I found is to just ignore them, or just say OK or thank you. It shows its not bothering you and they eventually stop.
***looking for advice****
My name is Megan.
My son is almost two. He has a left clubfoot. We are using the Ponseti method. I need advice on helping his to sleep better. He cries at night as if he is in pain. We have been through this before but it seems like this time is worse! Please share with meant advice or support! Thank you. Msw9133@gmail.com
Hi megan! Is this a new behavior! Check the width of th bar and the fit of the boots, what bnb are you in? Please join the Facebook groups “Clubfoot is treatable” “Clubfoot mommas” and there are more! It’s more active and you will get immediate help!
Every time my baby cried that intensely after casting it was the width of the bar. I seem to recall it should be set as wide as his shoulders.
My son has been diagnosed with intoeing and needs the Dennis Brown Brace while sleeping-he is 16 months old. I need tips/advice support of how to get it going I feel this is such a horrible way to fix this. He lasted 5 hours last night and tonight we will try again.
We didn’t go through this but I’m sure Evan would have had a better result if he had been put in the DBB. Please join the Facebook Group – https://www.facebook.com/groups/6428200812/ – There will be other parents there who can help.
I’ve read the stories and found them interesting because I have had clubfeet from birth but I survived with the affliction. I am now an old man of 76 and still hurting in some ways, mentally and physically.
Please come to my blog and read a story and comment right on the blog.
Scroll down on the blog to find many stories.
Your Friend, writerdave
Dear Parents & Family of clubfoot little ones,
Hello from “downunder”. My little boy was born with clubfoot and is now 2. I have not had an easy time of it with lots of sleep deprivation which is ongoing and my own health problems (sleep problem not related to his as well!). I’m sure there is lots of you who are sleep deprived too.
I found it so hard to find clothes for my little boy after 6 months and found it frustrating to say the least. I now have my own business (just me only sewing and running it) after leaving the corporate world due to shingles and have started to sew clothes and bar covers etc for our little toughies. The aim is to help other kids and also donate a little bit of money at the same time to CF charities. I launched on Monday and have $1.50 AUD to donate. It’s not much but it’s a start. The business is http://www.practicallyorganized.com.au if you are interested at all. I ship worldwide. I also will make custom bar covers as well on request. I take direct deposit for anyone without PayPal.
It’s not an easy road but I hope with support from each other to make it easier mentally and physically.
Suzanne Lee (you can find me on Facebook under my business name if anyone wants to chat or message me).
My brother received very bad treatment for clubfoot in 2006. He was born with his big toes testing on the insides of his legs, which from what I’ve seen is more bent than most babies are born with. He had below the knee casting “so he could move and develop more” followed by posteromedial release at only 3 months and 1 week.
He now is seeing a better doctor, and is going to need at least two more surgeries on his feet. His feet hurt. His feet are very stiff. I feel so guilty that I did not push harder for my mom to get a second opinion, that I just watched her accept what the doctor was doing and saying. I feel so angry that this doctor is still providing poor treatment, and so many other doctors are. I feel so angry that the possibility of going a mere 3 hours away to Iowa for treatment was something we never even knew was possible.
Every child deserves the best feet they can get, especially when the treatment is so cheap and the materials are so accessible. I cannot comprehend why the doctors are not providing the best treatment they can.
I just started a support group for parents of children born with clubfoot on Facebook. Please check it out, I wish I would have had it around when my little guy was first born. https://www.facebook.com/groups/860618920628977/
For me it great to get to read more about this. I was born with Double Club feet and had my first surgery when I was 7 months old and now Im 17 years old.
I am a teacher in New Zealand and I work at a special needs school. The students I work with have Cerebral Palsy and all wear AFO’s and the hatchback type shoes worn with the AFO’s. As my students’ bodies change regularly we are always needing to have new AFO’s and shoes made for them. The orthotics center used to take the old ones but now they do not. I am trying to find places where we could possible donate the AFOs as they are still in really good condition. Would these types of splints and shoes benfit the people who you work with.
You can send them to the Philippines Clubfoot Shoe Exchange
c/o CHERRYLYN H. RUIZ
A lot of kids in the Philippines that has clubfoot have very limited opportunity to have AFOs.
This will be a great help and a lot of cf kids will benefit from your donation!
I am Tanmay Vora, 30 from India. My son had a CTEV & got resolved through shalby Hospital Ahmedabad. We followed a ponseti method. 6 serial plaster & followed by tenotomy. intially for the 6 months He had to wear Splint with BAR but now as he grows bar has been removed now he was advised to wear AFO without Bar..we are comfortable & son grows gradually. He cant walk right now but we hope to see him walking soon.thanks for allow me to share my story.
I have a Quaetion..A procedure called a tenotomy is usually part of treatment. The Achilles tendon is often cut in an office procedure to complete the correction of the foot. How much time required generally the tendon has to regenerate a proper length.?
i m from Ahmedabad.
my new born is also having club foot.and we are going for ponseti method for correctio.
can you just give me the feedback regarding ur kids progress
I was diagnosed with this condition in both my feet in the 1960’s and went through a series of operations from 4 years old up to 12 years old including tendon transfer and finally the trilateral bone fusion. It was a defining experience of my childhood but one for which I am grateful now at the age of 54 and still being able to walk and enjoy life. I was never an athlete ! but those operations helped me to stay involved and enter my profession of teaching. So nice to have a site such as this and to share my experience and to identify with others journeys. Two of my sons also have milder forms – the journey continues! Darryl WA Aust
Darryl, I have had exactly the same experiences you have – same surgeries and am the same age. I was treated by Dr. Ponsetti in my early years, but ended up with a few surgeries. It’s nice to know there are others out there who have gone through the same life experiences. I have had an achilles tendon tear on my left foot in 2001, and most recently an anterior tibilalis tendon tear on the same in February of this year. I’m wondering if others have had any tendon issues as adults. Thank you for sharing.
I was born in 1972. I had right club foot. I was started on special shoes and fixation bar when I was 2 months old. Not sure how long I was barred but I remember corrective shoes until 3-4 years old. I’m now 43 and having serious Achilles issues. Could it be related?
i have a months old son who was borm with bilateral clubfoot. we have his treatment at the philippine orthopedic center
we are om braces now with the help of other cf parents coz we camy afford to buy. because of this we started a facebook page that receives donated braces and redistribute it to cf kids that cant afford to buy. pls help us with this advocacy. add me at facebook. gheghel obierna and message me. thanks
Dear..each braces has its own standard measurement of Ankle size & shape…It is advisable to get it new with original measurement of son’s Leg..plz dont consider as a expense…It is a Investment behind your Son’s Leg..
Your riddle/jokes page is possibly the greatest thing on the internet. Sorry about what happened to your kids.
My son was re-casted at two years old after some mobility was lost. It was casted for about 4 weeks. Now he won’t walk on it and complains it hurts and will barely let us touch it. I feel like I don’t even want to take him to doctor because it seemed fine to me before recasting and now he can’t walk! Has this happened to anyone else? I’m so worried about when he will walk again.
I was casted numerous times as a child. I was also put in bar shoes at about the same age where i was told i threw tantrums and wouldn’t walk. I did eventually walk. Make sure exercises are done and inserts are worn as they get older.Best of luck.
My nephew’s name is Ferdinand and we called him ghummy as his nickname. He is 7 months old, Filipino and born with Moebius syndrome associated with clubfoot. He got 4 cast already until he developed some blister on his extremities and was decided to stop. The doctor opted to remove the cast so it won’t complicate.Now he’s on wadding pad with bandage to immobilize his feet. His feet now are gradually improving.The doctor said to make an order of ponsetti shoes but my sister cannot afford it and only in US can order the said shoes. We are so blessed enough that someone in US donated a boots and unfortunately without a bar. We are praying that someone could donate us a boots with bar. His foot size is 5inch and 13cm. We are so blessed to find a support group like this. Thank you and God bless.
my daughter was born with clubfoot bilaterally. She is 5 years old now and is an active preschooler. It hasn’t been an easy journey as she has had many surgeries, castings, botox injections and bracing with boot and bar and now AFOs. I am so glad to see a website to support parents of club foot children or people with club foot themselves. I will be donating used braces/ AFOs. Thank you for the links
I live in goa,India. I am looking for a pair of shoes & brace for my 3 month old. Please help.
You can purchase them here – http://www.c-prodirect.co.uk/ or see if you can get them through CURE International India Trust
Hope this helps.
This is Rao from India, I am 32 years old, I have clubfoot both, still I never get surgery for my clubfoot, now I wish to get surgery for my clubfoot.
so please advice me
Thanks for your message. I recommend that you contact CURE International India Trust for advice and direction to local medical attention.
All the best,
Thanks you so much for your reply & advice
I am Tsegay and I have a son of age 6 years and 2 months. Until yesterday I did not realize that he had clubfoot problem for he has also neck problem that lean down towards left. when I brought him to a doctor he did not help but when I heard about clubfoot and took him to doctor who have advert on radio broadcast they find it is clubfoot problem. So far what I have referred in the website it is curable but in earlier ages. As I am from Ethiopia where the medication is poor both in its equipment and medical calibers. Thus I wish you help me in sending digital books and voluntary doctors list that consult me via the internet.
Have my best wishes that flow from the bottom of my heart
with best regards,
My daughter was recently prescribed a Denis-Browne splint to wear to sleep. It keeps falling off in the middle of the night. Is there a secret to keeping these shoes on her? Any help or advice would be greatly appreciated.
I’m not the best one to respond as Evan’s treatment didn’t even include shoes with bars! So I have no personal experience with this.
Have a look here – http://clubfootclub.org/about/braces/ – The Ponseti AFO is designed to be more comfortable for the baby making it much easier to accept then the previous Denis Browne Bar, parents are more able to use it and the baby will sleep through the night.
You can also ask on the Facebook group. There will be parents there with experience and tips. Hope this helps.
as i remember we had that problem too, my daughters foot would always slip out of the left or both shoes at night. The only advice I have is to pad the heel and back of the shoe with a insert to build up the heel space your baby might be missing ( I cut up a cheap adult sized one) which is giving her the room to slip out. Also tightening the laces tighter than you would like to to really secure that little foot in there.
I’m 49 yrs old, born with bilateral clubfoot in NJ. Multiple castings, not sure about number of surgeries, then braces, shoes . . . I thought I was home free and “normal” compared to masses. Now older and wiser I’m learning of many side effects I had no idea about when younger. For ex.- tight, maybe shorter Achilles’ tendon, small calfs, skinny legs, pain in ankle joint, some of which has decreased ability on the ski slope and other sports. Can’t stand up for long periods of time without extreme fatigue and long recovery period, e.g- working a trade show for 3-4 hours and that length of time gets shorter and shorter each year before I get fatigued.
I share this info. to learn from others, to know I’m not alone, maybe learn how to overcome some of these imperfect situations whether through exercise, therapies, list of doctors possibly for adults dealing with these long term consequences. I appreciate any feedback and the opportunity to share.
I’ve had much of the same problem, only for most of my life, but getting worse with age. I’m In my 40’s and i was recently diagnosed with having arthritis in both ankles. I’m looking to have a nerve test done, thinking that nerves may have been damaged during surgery. I find the new balance inserts or the ones from wall mart (the ones where a machine tells you what inserts to get) make walking bearable. Note: a full shoe size larger is required with NB.
I am now 54 years old and have lived with arthritic ankles for a number of years now. Being on my feet for extended periods was crippling – not helped by increasing weight – which was not helped by limited ways to exercise (catch 220 6 years ago with acute ankle pain in my right foot I ended up having a splint to hold my ankle rigid to avoid further ankle fusions – the ankle has naturally fused and I am free of the splint and using a much improved orthotic insert. Having now lost over 30kg (and counting ) through weight watchers my movement is improving immensely. Life has been difficult but with good Podiatiric care and healthy lifestyle changes it is being managed
Hi. My name is Caitlin Hylton and I was born with clubfeet (both feet). I started a clubfoot awareness page on Facebook in hopes to start a fundraising initiative in my home town and at my school. I hope it was ok that I shared your website on my page!!!
Hi just wanted to give back!
My son turned 8 this summer! Wow how time flies. He was born with club feet on both his right and left feet. He was treated in Toronto, Ontario with the Ponsetti method. We used the shoes until he was 3 every night! I have two younger kids without club feet and wonder how we ever managed to tie up those laces so many times – but we did. Now 8 years later I can say that my son has no side effects from club feet – he deosnt even know he had anything wrong with his feet. He just qualified for elite hockey and there is no stopping him. I am sure that his calves are weaker then his fellow teammates but e knows no difference. My word of advice is if you do get the Ponsetti method be sure to get those boots on for as many years as you can at night! Your child will grow up like any other child.
From one club foot mom to another..
Born in the early fifties with bilateral clubfeet. Wish there was a
support system like this when I was a kid. Thanks for offering us
clubbies a place to share.
Hi im a single mom with a 4mos old baby. My baby has clubfeet. We’re in San Francisco. We go to the hospital every week to put his cast on every week we need to go there to change it like about 16 casting all in all then finally they said their going to put him on shoes suddenly when we arrived and put him on a shoe they only put the sure step brace for a mom like me that really worried cause i thought that he will have the shoes with the bar because that one will really help him but i think because the shoes that I’m expecting is cost a lot of money to the healthy San Grancisco insurance that why they didnt get that instead they give this one im very very sad cause my son will going to use the surestep shoes until he gets older in short he will rely on that until he get used to it.then im curious to find some ways to help my son i prayed then i saw this article website that your been helping for donation for those kids with the clubfooted and i hope this message will be read and help us to have this particular clubfoot shoes that your giving away cause he really needed so badly please help us especially my son his lovable child i hope and pray somebody give us attention for this matter thankyou so much and godbless you all
Please read this about the Ponseti Method. If your doctor isn’t doing this method find a different doctor. If it is a money issue… go to Shrinner’s they are free. I think you have a doctor who is doing old methods. Get another opinion from this list of Ponseti Trained Doctors.
I have a daughter, 21 years of age, born with severe bilateral club feet. She had three sets of surgeries before age 2 1/2 to correct them. About a year ago she had a fusion surgery in her right foot. Now she suffers from much pain.
Two types of questions: 1) how are other people managing pain in the feet, calves and hips? Has anyone tried electrical stimulation such as a TENS device? 2) what type of medical specialist provides club foot care in adulthood? The surgeons seem to lose interest in the patient after about age 15.
I know exactly what you mean. When a surgeon sees that there is nothing more surgically to do that’s it. I haven’t found any specialist that can help. Especially now, those who had surgery — before the Ponseti method became so popular — have been abandoned by the medical community.
Many thanks for your comment. Today, my daughter is visiting with a pain clinic and she is trying the TENS therapy as an alternative to meds. I am curious whether other people have worked with electrical stimulation for pain management. Also, what has been people’s experience with podiatrists?
My son just turned 10 on July 4th and thanks to a feed on facebook that I saw this morning, I now know what happened to Ethan. He was born with most of his toes not fully developed, a couple of them had what appeared to be “rings” around them and his left foot was turned up toward his leg. The doctors told me when he was born that this was called club foot and he went through all of the casting until he was 2 years old at which point they did surgery. Through all of this, all the doctors would tell me was that they did not know what causes it and had no explanation for his underdeveloped toes or bands around them. I have always suspected that there were some sort of strands of either tissue or skin that had wrapped around his toes and feet but until now have never heard of ABS. I am so thankful to actually have an explanation for my son now (not that it changes anything), it is just nice to finally know what went wrong.
I was born with Bilateral Club feet. It was so severe that the surgeon didn’t even both with the standard corrective treatments, instead opting to simply go into surgery when I was a month old. I’ve had 13 surgeries, including one to remove a tendon from my knee and place it on the inside of my right foot with a plastic tube to make my muscle work again. I’m now 22 and extremely active, though I do deal with occasional sharp pains and an almost constant aching in my lower back; nothing debilitating.
My name is Mike and I have son name Claudio with Bilateral Clubfeet he is going to be 4 months old on the 28 of May. He is a happy healthy baby always with a smile. We didn’t know that he had club feet until he was born and even then I didn’t know until the nurse said something although my wife knew immeditaly that something was wrong but ignorance is bliss. At 4 days old we started the casting process at Denver’s Children’s Hospital with the ponseti method (i knew nothing about clubfeet until 4 months ago)and we are just starting the foot braces and physical therapy. It has been hard on me and my wife but we are super positive that he will be just fine. He will need one more tenotomy on the right foot as it was more severe than the left, the next big hurdle is the MRI to determine if he has a tethered cord. I would like to thank all the doctors who treat club feet and to all the people with club feet you are awesome and a big thanks to Ruth Evans mom thank you for this website it has help me out more than I can express with words THANK YOU!!
Claudio update got his MRI results backs and no tethered spinal cord, so now we just have to work on those cute little feet!!!!
Claudio update in December 5 our little man had what is hopefully his last tenotomy on both feet.
Update. After 6 weeks of casting little Claudio is doing great and his feet look good, it looks like this time the Tenotomies went really really well and we are now only using the ponseti shoes at naps and night time. He starts therapy here pretty soon too. We are very lucky, thank you!
Claudio update; after starting therapy we were encouraged by our therapist to seek a second opinion because his right foot still didn’t look right and the bones were not in the proper location, and he has had 2 tendotomy on his left and 3 on his right. After about a week of talking it over we decided to go ahead and go see another doctor about Claudio, we made an appointment with Dr. Morcunde in Iowa at the university hospital and we made the right decision. It has made things a lot more difficult because of the travel (it is not cheap either) where before all we had to do was to drive to Denver, but we are on track with a great doctor and staff. So since then Claudio was in casts for 4 weeks and now he is using the boots and bar for 18 hours a day, he is 15 months old and we are hoping he starts walking soon.
Hi my name is Angie and I am 39 yrs old. I was born with a clubfoot, right foot. Back then the only option was surgery and we were fairly new to Canada so my mother didn’t know a word of english. Other than knowing they were fixing my foot she didn’t really know what was happening. I went for years not knowing what was wrong with my foot.
I had a full leg cast, some type of shoe brace after the cast came off. I did physio as a child.
Today, my foot is 2 sizes smaller than the left foot. It rolls slightly to the side, I have knee pain and I believe arthritis may be a concern. Some days I get such severe pain that I cannot put any weight on my foot at all, but for the most part, things are good.
I’m glad to see websites and facebook pages. For the longest time I thought I was the only person born with a “strange” foot.
Hi, Angie. My name is Margie. I am 62, and am in the US. I too, was born with a right clubfoot, needing casts until walking age, white prescription ” baby” shoes, (I had a little trouble with a girl named Sherry in first grade over that one, until my mother spoke with the teacher.) I had surgery at age eight, then brown high top shoes prescribed at age nine. Other than that, and the fact I could never think about toe dancing, (I had a tu tu just for play.), I sailed through childhood. My foot has always been two sizes smaller, and now I have a callus on outside edge that gives me some pain. I can’t hop on my right foot, never could. I have had several foot and leg infections that put me in the hospital, and now, some kind of circulation problem causing me severe stinging pain in one spot on my right calf. This lasts usually fifteen minutes at a time. That doesn’t mean it will happen to you. The most problem I have now is I put more weight on my other foot, and I have developed a callus on the ball of that foot that burns sometimes. I forgot, my right foot swells too, now, when I don’t keep it elevated. That’s a tough one.
I knew in reality I couldn’t be the only one, I just wasn’t acquainted with any. There are probably relatively few, which is I’m guessing the reason my surgeon finally went into sports medicine. He released me by age fourteen saying my mother could bring me back later if we wanted to shorten one foot and lengthen the other! She instantly didn’t like that idea, but now I wish she had.
I have custody of my 22 month old grandson. He had corrective surgery on 12/18/2012. He has been given AFOs that are calf high. They have two velcro straps. His little feet are always sweaty at the end of the day. He has continually carried these cute, well made Sketchers shoes around. Today I put him in socks and those shoes. Am I doing a bad thing?
I’ll email you directly
Hi, I am from Poland. My son was born with left clubfoot. We started Ponseti treatment method in his 3rd week of life. He’s 4 months now and he is still wearing plaster cast (now it’s 13) which is changed at weekly intervals.I have read that according Ponsetti method 6-8 plaster casts should overcorrect the foot. In our case treatment is prolonged. The foot is stiff. The doctors says that our son will have a surgery, but they did not confirmed it still. I would like to ask if there is a possibility that so long plaster casting could affect on foot deformity? Our doctor said that it’s not possible. Do anybody of you have any experience in such long treatment? It would be nice to get some more information from people with the same problem as mine. Thx!
I have two questions for those with a unilateral clubfoot that was corrected at a young age. 1. For those in their teens, do you ever get pain in the back of your knee, calf, and achillies? Also, For those who are older, do your muscles in your leg deteriorate, like either muscular atrophy of distrophy?
I was born in 1977, and am 35 now. Had unilateral clubfoot in my left foot. I had two operations as a small child, one to lengthen my achilles tendon and another to lengthen the anterior tibial ligament. I have been very active throughout my life playing many sports, however I have had some challenges. My left foot and leg always fatigued faster than the right and got very sore after running. This became more prevalent during my teenage years. Slowly over time I started having other injuries due to my always compensating for the lack of strength and balance in my left leg. Istarted having some back issues. Soreness, stiffness and I have had some slippage of discs more recently. PT and core strengthening helped quite a bit with that. I also started wearing an athletic ankle brace which greatly improved my stability and stamina. I now wear Mueller “the one” ankle brace on a daily basis. Walking has become more painful, as is everything for that matter, and I believe I’m starting to experience some arthritic issues along with some pain in my left knee and hip. So even though I dont let it slow me down during the day I do pay for it later. I’m sure things will get worse down the road and have been looking for options on other treatments. The worst is getting up on my feet in the morning. Lots of stretching and waming up muscles. But everything pops until it’s in the right place and then I go about my day. Just dont let it get you down. It only makes you stronger.
I don’t get DB AFO braces in my town in India.how can I access to one of those donated shoes for my 4month old daughter?
You will need to talk to one of the Ponseti trained Doctors on this list. You can also purchase the brace online from c-prodirect. I no longer collect braces personally, braces are sent directly to CBM projects in Africa and Papua New Guinea.
My daughter Nikkai was also born with club feet she is fifteen years old now but still attending the doctors are saying that the only thing they can do now is a surgery call cold fusion
I think what you are referring to as cold fusion is arthrodesis where two or more bones are fused together. The surgeon uses bone from somewhere else in the body. This is a procedure done on older patients who may have had other surgeries in the past.
I am 58years old born with bilateral talipes. Live in England.
Unfortunately all entries from October 2011 to February 2013 have been lost. I wasn’t fast enough moving them over from the old guestbook system. 🙁
How did you go about collecting used braces to be sent on to reuse?? My son has a club foot and I would like to donate his old brace and contact his dr’s office to have them collect used braces to be forwarded on to children who could use them
I contacted CBM’s Canadian office and arranged to have them ship the used orthotics in containers they are sending overseas.
Check out the Club Foot groups on Facebook.
1) adults/ teens with Clubfoot
2) born with clubfoot
Lots of activity, helpful information, and wonderful new friends waiting to meet you all.
I WAS BORN IN 1955, I HAD DOUBLE CLUB FEET,IN1958(ish),I HAD THE FIRST DYLWYN THOMAS OPERATION,WHICH WAS SURGICAL AND PHYSIO,I HAD FULL PLASTER CASTS(6 months each),THEN PHYSIO FOR MONTHS AFTER,NOW I AM FINE , SOMETIMES I GET ARTHRITIC ACHES AND PAINS, BUT GENERALLY FINE, I WOULD LIKE TO KNOW IF ANYBODY ELSE HAS HAD SIMILIAR OPERATIONS.7KUB
I was born with double club feet in 1953, treated with casts, and then at age 2 had lengthening of the tendo-achilles bilaterally. By about the age of 30 I had trouble standing in one place very long, although walking did not cause problems. Now at 59 both ankles are covered with large purple veins and I still can’t stand up stationary very long. Also there is not much flexibility in my ankles: when barefoot my heels don’t even touch the floor.
Donald have you found a web site that sales wide width shoes with at least a two inch heel on them I was also born club foot in both feet and all my parents would let the Drs do was put my feet in a cast they wouldn’t let them cut my heel cords down my feet hurt so bad that sometimes I cry they feel so tight on the bottoms do you also suffer from this. Also
We’re very experienced with spina bifida and bad clubfeet (mine were not diagnosed until my middle thirties). I have had one surgery related to this and a lot of time spent in orthotist offices along the way while being a broadcast engineer and parent of SB kids with clubfeet and my wife with same. I will soon need another surgery along with more bracing at night and my AFO braces which get my job done. Thanks for your site’s help and perspectives from parents and adults and kids. At my job, most of us in engineering have had clubfeet, we’re collectively known in our industry as the Clubfoot Crew and proud of it.
I had a son Feb.25, 2010. He was born with a left club foot. They say its a mild case. He has to have serial casting for the next 6 weeks and then have his achillies tendon clipped after that… then
a cast that stays on for 3 weeks and then the Dennis-Browne bar brace for 3 months … 23 hours a day and then every night when he sleeps until he is 4!!! The doctor keeps telling me it will be ok and
we wont even know he had a clubfoot after this process is done. But i read some of these stories on here and I’m not so sure. Right now it doesnt look like his one calf will be smaller than the
other.. they look the same. Im sure that will change as he grows and gets older. I dont want him to have a hard life because of this…. the thought of that kills me!!! I feel so bad for my baby!! Can
anyone tell me a good story that ends they way i want it to… or are these children doomed to a life of teasing and pain. I really hope not… please someone tell me there happy ending 🙂
I was born in 1946 and was diagnosed with clubfoot of my left foot. It’s been a difficult journey, but groups like this make it much easier. Thank you for the support.
Robert King, Placentia
My youngest son Deante was born with bilateral congenital clubbed feet. He is 14 months old now. he is doing great.
Tanya, Reed City Michigan USA
I was born in 1976 an diagnosed with club foot of my right foot. After having a great doctor and a successful surgery I was able to function like anyone else! But after 26 years of playing sports walking and going to the gym I am begining to feel pain on the outer side of my ankle. If anyone has a great doctor in the central coast of California that can help me I would greatly appreciate it if you could e-mail me!!!!! Thanks,
Nancy, Hollister California
Catching up with my data files. Ruth, I have a job at a trauma centre at the moment and have been even busier. I haven’t forgotten you and will try to keep in touch. Thanks for your support for the children of Papua New Guinea.
Dr. Annette Holian, Australia
My son is 9 years old and has bilateral club feet and Cerebral Palsy Pat has thinning of the calf muscle and toeing (his toes always sit on top of each other) I now know that the type of C.P. Patrick has causes deformity of the lower extermities tighting of muscles, heel cord problems and contrature of muscles Does anyone have a child with Cerebral Palsy and club feet?
Thanks Fran Wyrsch and Pat too!
It’s great to see a community for us clubfoots. Rock on.
Anna, Talula, LA
I’m 39 yrs old and I have a club foot…
Angela, Woodland, Calif.
I am 14 years old and doing a report on clubfoot. I think this site is very good and has helped a lot with my research. I am even using the picture of your son on my powerpoint presentation. Thanks for all the great info.
Paul, Philaelphia, Pennsylvania
Born with severe deformity to both feet. Mother was born with one clubfoot. Amazing advances between generations.
Carleton Place, Ontario, Canada
hi! I’m a 19 years old girl that suffered bilateral club foot when I was born (I have a twin sister that also had it but with her, the conventional treatment worked very well), but my case is a bit different because the first cast that they put me wasn’t removed until almost a month had passed, so surgery was required because my right foot was motionless in a talus position. I needed months of rehabilitation and treatment,(I still remember when I couldn’t sleep because of the denis browne splint!! 😉 But now all those days have passed and I am happy because my life is completely normal, although my calf muscles are underdeveloped and I need inner soles.
I would like to thank you for your work in this web side. each day I read a bit of it and I can learn more about my pathology. If I find something that could be useful for you, I will let you know. Give Evan a huge hug!!!
Ps: sorry because my english is not very good, but I’m doing my best 😉
Nerea, Barcelona, Spain
Excellent – very informative
My son Seth is now 7 1/2 years old. He was born with bilateral clubfeet. He went thru the casts and surgery, then braces for 3 months. He now has been doing ok, some pain especially after baseball. He is in karate and doing well. His legs look just the other pictures I’ve seen of other kids. His calf muscles are under developed, he has toeing in and his little toes curl under his other toes. The only thing I noticed he has a hard time with is standing on his toes- he can’t do it. Thanks for listening.
Julie Demerly, Mayville, Michigan USA
My son is 6 mos. old and has unilateral (right) clubfoot and a missing toe on that foot. He had his first cast on at 3 days old and still wears a cast. He has had a tendon release and is scheduled to have a posterio medial release in May 2003. Much of the information posted here has helped me make the decisions I have made. I hope my little man will be as happy as Evan looks!!
Eva, Queens, NY
My son was born with bilateral clubfeet, he is 2 years old, has had surgery and awaits repeat surgery. I have found loads of clubfoot info on the web, but missed this site (info overload, maybe!) and am pleased to have found such a clear, informative site. I’m also excited about spreading the word in the UK about sending and re-using splints.
Sarah Parker, Bournemouth, England, UK
Our son is 13 months old, born with severe bilateral clubfeet, 3 surgeries, night/nap AFO’s, now walking with in toeing. Waiting to see surgeon.
This is a great site! I will be sending Ryan’s old splints to New Guinea this week!
Kerriann, Bay Shore, NY USA
Our Daughter was born with abs and club foot. She is now 2 and we are working hard to get her through all the surgeries we are now using shriners and that has been the best for us so far.
DEREK AND NICOLLE WILLIS, Deer River, mn usa
My son was born with club feet and when we first saw it my husband and I didn’t really know how find out about it so I am thrilled to see all the web sites that can explain and other Parents can understand it better. My son is 4yrs old now and he is doing great he may need at least one more surgery but he is doing well.
Amy Snyder, Blaine
I really like your site and it was also very helpful.
Kristina Landrum, Boonville
You have a great site. This helps parents who are new to having a child with clubfeet
Monica & Zachary, Kingston, Ontario, Canada
Ours names are Shellie and Tony Wornell.We just had a ultrasound at my wife`s 7 month stage. While having the ultrasound it was pointed out to us that our baby boy has clubfeet. After the shock wore off, I got upset with the fact that last ultrasoud we had know one caught this! Considering our ages, we thought we were lucky to have a heatlhy baby with no problems until yesterday. I guess i’m frusterated because we were told we had a big healthy baby up to this point. We were just going in for a updated ultrasound to measure the baby. So today i’m reeling abit trying to get as much info as possible about this conditon. This site as been a help . Thanks
Tony, Seattle / USA
my son Brady recently had surgery on both his feet. After 6 weeks of casting his feet look great. He is now wearing the denis brown splint. We are all trying to get used to them. My husband and I are having a hard time getting Brady to keep them on. Does anybody have any suggestions? we would really appreciate any advice. Thanks
Stacey, North Bay Ontario
I love this site thank you so much for making it! Evan is a little cutie pie. I vistied the site due to the fact that in March of 2000 my son D’Angelo was born with Bi-lateral clubfeet and we were BLESSED enough to get into a GREAT surgeon by the name of Dr. Jeffery Farber, Iowa Orthapaedic Centers. He was a student of Dr. Ponseti at the University of Iowa, so we had been sent a true gaurdian angel in the form of a Dr.! D’Angelo is now 2 and a half and is as vibrant and beautiful and FAST as any of his 2 and 3 year old friends. Again thank you so much for creating this site, wish I could have been fortunate enough to have a site like this around to help me with my decisions concerning D’angelo Thanks and God Bless You!
Sarah Schumacher, Fort Dodge,IA ,USA
HELLO,MY NAME IS SEKITA.IM A 21 YEAR OLD WITH ONE CLUBFOOT.AT FIRST I WAS EMBARASSED BY IT,BECAUSE MY RIGHT LEG AND FOOT ARE SMALLER THAN MY LEFT. BUT AS I GOT OLDRER,MY MIND STARTED CHANGING.I DONT CARE WHAT PEOPLE THINK ABOUT ME.AND THEY REALLY DONT CARE ABOUT WHAT I HAVE, BECAUSE THEY STILL LOVE ME FOR ME.SO TO ANYBODY WHO IS EMBARASSED ABOUT IT,THERE AINT NO NEED TO BE EMBARASSED, BECAUSE IF THEY TALK ABOUT YOU AND WHAT YOU HAVE,THAN THEY ARE THE LOWEST PEOPLE ON EARTH.
Our child is 18 days old and had his first cast put on today. Are there other resources you could recommend? I thank you and Evan for this Web site,
we are in the midst of adjusting to learning about our baby’s condition today and I found your site a great comfort.
Matthew, Toronto, Ontario
My son was diagnosed with bi-lateral clubfoot when he was still inside me.
I didn’t think I was recieving adequate treatmen t where I live and I was fortunate enough to be recommended to Sick Kids. My son is now a year old and he has come a long way and his feet look alot better. Thank you Sick Kids for helping my son and making me realize I wasn’t the only one with a child who has this condition.
this was areally great site. I was able to get more information on what to excpect when my son has his clubfoot surgery Nov.18
I had club feet when I was born over 40 years ago my daughter who is 16 yrs. is now doing a project for school on the condition
MY SON DANIEL WAS BORN ON MAY 7,2002 WITH CLUBFOOT. MY HUSBAND AND I HAD NEVER EVEN HEARD OF SUCH A THING SO,WHEN WE WERE GIVEN THE NEWS AT MY FIVE MONTH ULTRASOUND APPT. IT WAS QUITE A SHOCK. WE WERE REFERRED TO CENTRAL VALLEY CHILDRENS HOSPITAL FOR A SECOND OPINION AND IT WAS CONFIRMED THAT BOTH FEET WERE CLUBBED. A WEEK AFTER DANIEL WAS BORN THE ORTHOPEDIC SURGEON BEGAN CASTING BOTH FEET. AFTER ABOUT TWO MONTHS OF BI-WEEKLY CASTING DANIEL BEGAN KICKING OFF ALL OF HIS CASTS. AFTER ABOUT SIX MORE SETS OF CASTS, INCLUDING LONG LEG CASTS, THE DOCTOR DESIDED TO STOP CASTING UNTIL SIX MONTHS OF AGE AT WICH TIME HE WOULD SCHEDULE SURGERY. WELL TOMORROW IS THE DAY THAT WE GO IN FOR X-RAYS AND GET A MORE DETAILED DESCRIPTION OF WHAT IS INVOLVED IN THE SURGERY. I BELIEVE THAT HE WILL BE CUTTING THE TENDONS BEHIND EACH LEG TO GIVE LEVERAGE TO THE ANKLES AND THEN RECASTING. THIS TIME HAS COME MUCH TO QUICKLY AND I AM VERY SCARED OF WHAT LIES AHEAD. IF ANYONE HAS ANY ADVICE FOR US PLEASE E-MAIL ME!!
My son, Jonah, was born with the condition in May of 2000 and has had the surgery. He is doing remarkably well. My husband was also born with bilateral club feet, and his mother with one club foot. Both orthopaedic doctors assured us
that it is not usually hereditary but the doctor that performed Jonah’s surgery finally admitted that in our case, it probably was. Jonah’s older sister was born without the condition, as was both of my husband’s sisters and their children. I am sorry that it has taken us so long to get hooked up to the net so I could research this more extensively. I am so glad I’ve found this and welcome anyone who wants to email with questions and/or comments!
Thank you so much!
After 12 years of marriage we were blessed with the most beautiful baby girl, Janine(d.o.b. 22 March 2001). She was born with severe clubfeet. The left foot was tighter than the right one. When the orthopedic visit me in the hospital and explained the condition(it was the first time I had ever heard or seen something like that), I realize that I have a lot
to be thankful for, because this is something that can be treated. Janine was placed in cast when she was two days old. It was replaced ever two weeks. She loves water, so the night before her visit to the orthopedic it was our special time together. After six months it was clear that she needed surgery. Now she was wearing AFO’S. For the whole six months we went to the orthopedic, she was the only child with clubfeet. In November 2001 we took her to a orthopedic in Cape Town (Dr. Jimmy Wade). He is such a great man and I think one of the best in South Africa. On the 24 November 2001 Janine went into surgery(both feet) for three hours. After the one foot was done, the doctor let us know that it was a success. She was wearing the cast for two weeks, was changed again under surgery. She wears that cast for six
weeks. Dr. Wade told us that he doesn’t think it is neccesary for further cast or AFO’s. We returned back to Upington. The casts and pins were removed on the 17 January 2002. Thank God, no more treatment and her feet look wonderful!
My 13 year-old niece (on my wife’s side of the family) has a case of what I believe to be clubfoot, that also affects her arm. She currently resides in Indonesia and I am attempting to bring her to the USA for treatment. My niece’s conditon is severe and just recently she has been getting a lazy/crossed eye on the same side as her foot and arm conditon. If anyone has heard of eye disorders being connected to clubfoot, if would be helpful info. I have not been able to get her properly diagnosed due to the distance between us and am not even certain of the exact name of her condition. But the information that I have gleaned off the internet, etc. thus far supports my belief that it is clubfoot and I am optimistic that she can be helped. Any information, advice, words of inspiration, connections, etc. will be received with the utmost gratitude.
I AM A 38 YEAR OLD ADULT MALE THAT, AS THE RESULT OF SEVERAL SURGERIES, CASTS, BRACES AND CORRECTIVE SHOES AS A CHILD, NOW LIVES A NORMAL LIFE. I AM MARRIED AND HAVE TWO UNAFFLICTED (THANK GOODNESS) CHILDREN. I HAVE NOTICED CERTAIN “THINGS” HAPPENING AS I HAVE GOTTEN OLDER. ONE, I HAVE NEVER BEEN ABLE TO MOVE MY 4 SMALL TOES AT ALL, EVER. AS A RESULT, THEY ARE STARTING TO CROWD TOGETHER INTO HAMMERTOES. TWO, AT 15 YRS OLD, I DEVELOPED TWO SMALL LUMPS NEAR THE FRONT OF EACH CALF, IN THE MIDDLE OF EACH CALF, THE SAME PLACE ON EACH, AND THREE, I HAVE RECENTLY DEVELOPED OSTEOARTHRITIS IN MY RIGHT KNEE. I MENTION THESE THINGS IN THE HOPE THAT IF SOMEONE ELSE IS EXPERIENCING SOMETHING SIMILAR, THEY MIGHT SEND ME AN E-MAIL TO SHARE THEIR EXPERIENCES. THANK YOU.
What an amazing web page. I know when my son Alex was born
8 1/2 yrs ago, I had no information except what my doctors at Kaiser Permanente had told me. Alex would not walk, and no surgery could be performed to correct the webbing on his left hand. Shriners Hospital in San Francisco proved Kaiser wrong by doing surgery at 4 months, and Alex walked before he was one year old. I would give every dime to Shriners – they have truly changed our lives. Thank you for this web site, it is an
inspiration to all who have been affected by these conditions.
Hello, I want to thank you for this site it definately is an inspiration for the future of my son. Dean Anthony was born Feb. 13, 2001…He just turned 15 months. He was born with 3 fingers webbed together on 1 hand and 3 fingers were amputated on the other hand….he had a band around his ankle and we thank god he was born 6 1/2 weeks early or the doctors said he would have also lost his foot….He was also born with severe bi-lateral clubfeet….he was casted when he as 2 days old….He too went through several surgeries….7 to be exact before he turned 1….He might possibly need some more with the clubfeet and possibly some more on his hand…..In December of this year right before his 1’st Christmas the doctors found a tumor in 1 of his testicles…they removed the testicle and told me it was a germ cell tumor…This was cancerous….Thank God they feel they got it all…His blood levels went back to normal and they will take his blood every 3 months to make sure he is ok….My son is the most amazing child ….He is so active..I remember when he was first born I didn’t know what he would or would not be able to do….but I believe he will be like Evan….I know he will be fine…His personality is beautiful…He is so loving and happy and outgoing…When he is old enough I will have him read Evan’s story ….and hopefully learn from it…I know I have….God Bless you Evan and your family…You are so handsome….and strong. I pray my son will be just like you….Danielle Mauro
I have a 3month old son and he is my joy to life. Thanks for this web site.
Bengiman was seen and treated by the Ponseti Method by Dr. Ponseti in Iowa City, Iowa, USA
Finally I have found a place where what has happened with my 9 year old son is close to home. He also has been treated at Sick Kids by Dr. Wright – just like Evan.
Thank you for sharing your story, I needed that. Not too many people know or understand my concerns for my daughter, not even the Doctors. Only someone who has gone through it can know the pain and anguish we go through. I would like to correspond with others who understand or that need some form of support. My daughter is a beautiful 12 year old tween and she is very confident. She understands and accepts her condition much more than I do and is a strength and support to me. She truly many times is my hero.
Our fourth child was born with bilateral clubfeet,quite serious, almost 12 years ago. I remember being first relieved that her problem was not life threatening, but then worrying that she might have been destined to be a dancer… She had surgery at 18 months and had good physical results, though the trauma of surgery and hospitalization stayed with her (and us) for some time. Today she is a dancer and a confident, happy girl. I so wish I had this kind of resource to go to when she was a baby – if I can be of any help please feel free to email me.
I have 2 daughters both with two clubfeet. Just looking for ways to help other parents.
Pls Andra at what age did ur daughters walk? My daughter has club feet, she is 14 months but not walking yet?
I wish this information was available 14 years ago when my son was born with ABS and one clubfoot. Even geneticists couldn’t give me this much info. I empathize with you. My son Alex went through the surgeries, casts, etc………
My son David was born with bilateral clubfeet and a disease called arthrogryposis from the knees down. We are looking for friends who can chat and understand what we are going thru. David just turned 10.
In looking for something else I came across your Web site and thought I might give some encouragement to some of the parents. 41+ years ago I was borm with a Clubfoot and taken to the Shriners Hospital for their new treatment of using cast and splints. At the time they had no idea how long this “fix” would last. I was one of the first they tried this on — and now 41+
years later, all is well. I wear special orthodics in my shoes to keep my ankle from turing out, but overall things are better than they predicted at my birth. Hopefully this will ease some fears or perhaps help you start a Follow-up section. (I also have Constricton band syndrome with several missing fingers and toes along with other defects of the fingers and toes — that has turned out OK too — teen years were hard but adulthood is good. And in retrospect, I’ve learned a lot of compassion for others through growing up “different”.
When my son was born in June of 1999, I knew nothing of clubfoot. How surprised I was that he was born with the condition. This website, and many like it are a blessing. It was really nice to know that I was not the only one going
through these things!
Hi, I just wanted to visit and see what you have done with your site. You have done a wonderful job. Thanks for including Tanner. Wishing you and your family many blessings.
You’re doing a great job of informing people… Thanks for caring enough to share your information with the world.
My seven week old daughter has talipes in her right foot. She was induced
prior to full gestation due to growth retardation and also a reduced amount
of amniotic fluid. The information provided has been very useful.
I’m 17 and 7 months pregnant with my first child. I’m really happy to have found your Web site and I shall now ask my doctor if he is able to do the Ponseti treatment. Until my baby is born I won’t know the severity of his little feet or even if they are severe at all, but I am quite content about his (whoops, or her) feet being totally correctable. Thanks for the info…….
Great Web site, Evan’s Mom. You did a great job. I too have son with ABS, he will be a year old on Oct 31/2001. He has just started to have corrective surgery on his club foot. The doctors recommended us waiting on his hands until he is around 2 years of age. So that is where we are right now. Dylan’s personality is what keeps me going he is so content and happy always. Thanks for a wonderful Web site, it was enjoyable to read and hear about Evan. Hopefully everything continues to go well for you and your family.
It’s great to be able to sit and read a Web site like this. I have 4 children 3 were born with severe bilateral clubfoot. Our youngest being 8wks. My partner and I are old hands at it now travelling to hospital, soaking the plasters off etc. I am So pleased that I stumbled on to this site. Our 2nd child was born ’98’ but he was our first with clubfoot we could not find any information regarding his condition.
Just wanted to say I thought your web site was great. I had a son born in May 1993 with bilateral club foot and I wish all of this info was as readilly available then as it is now. Keep up the good work!!
What a great webpage – I also had bilateral club feet and corrective surgery at the age of 6 months in 1980. Good luck and keep up the good work!
Thank you for sharing the site – it’s now linked in Clubfoot.co.uk
You’ve done a great job here. Thanks for sharing it with me.
I learned of your web site via firstname.lastname@example.org. It looks great!!!
Andrea & Alexa
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June 3rd celebrate World Clubfoot Day