NoSurgery4Clubfoot is not an anti-surgery ideal. The name heralds back to times when surgery was the main and often only treatment for clubfoot (pre 2010). The first online parental support group was a YahooGroups.com listserve and online groups stored on Yahoo servers titled NoSurgery4Clubfoot. @yahoogroups.com.
This group was the first Ponseti advocacy and support group onine, and key to providing parents with the correct and proper information that could help their child have good feet. The parents who insisted Dr. Ponseti come out of retirement and treat their children are the founders of online support groups, and if not for that group my own child would have never had the opportinities she has as a clubfoot person.
Most clubfeet used to be treated with surgery after months of serial casting with below the knee casts that never helped correct the feet. That Dr Ponseti figured it out, is something else entirely than breaking bones and forcing a foot to appear straight, while causing stiffness and pain and disability.
Surgery, in this case that is discussed here, is the old school surgeries that most adults today had as children, around 10 months of age. Often this is the Posteriormedia Release (PMR) for many under 40 years of age.
Surgery, in the case of a non-surgical Ponseti Method patient today, is not considered a surgery in the same way. The Achilles Tenotomy is required in 90%+ cases of clubfoot. And it is not a major surgery. It is a Tenotomy Clubfoot surgical procedure and should be done in office with a local anesthetic.
Nor is it the Anterior Tibialis Tendon Transfer (ATTT) that is common for recurrent relapsing clubfoot after Ponseti Method treatment. The ATTT surgery is usually done after all other casting and bracing options have been exhausted, usually not before 4-7 years old.
Surgery in this case is the/a "big surgery", which would be any involved surgeries that clubfeet have historically undergone such as the one shown to the left (above on mobile) done at or around 9 months to 1.5 years old. Once those big surgeries are done, there's is usually no going back to non-surgical methods such as the Ponseti Method.
**There is some literature that suggests that feet previously treated with surgery can benefit from Ponseti Method treatment but generally the destructive nature of these surgeries leave the foot stiff and painful. This is why the Ponseti Method is now considered the Gold Standard for clubfoot treatment.
NoSurgery4Clubfoot at Yahoo Groups fought this trend to always do surgery for clubfoot back when it wasn't popular to fight against surgery. At the time, Dr. Ponseti had only recently come out of retirement to help babies again at the University of Iowa. In the late 90's and early 2000's only a very few clubfoot children received the Ponseti Method. Most surgeons were still unconvinced the Method worked, and many continued to do surgery despite overwhelming evidence and study results showing that it worked beautifully.
NoSurgery4Clubfoot (this site) is not about avoiding all surgeries, however we are about promoting the Ponseti Method without deviation or modifications, and avoiding any large surgeries on clubfeet until all non-surgical options are exhausted.
Some feet are going to relapse, even when everything is done perfectly. NoSurgery4Clubfoot is dedicated to providing the best information for parents. We hope to help keep the overall rate of relapsed clubfoot needing surgery to the smallest number/percentage, as Dr. Ponseti proved many times with his published studies,
Should surgery be needed after all options are exhausted and everyone agrees, we totally understand. That's what surgery is for, and can be the one thing that works for some feet. Keep in mind that "everyone" does not mean "everyone" you know, including strangers online. "Everyone" means everyone in your own private group of decision makers only.
NoSurgery4Clubfoot was a Yahoo Group that I discovered online in 2003 when my daughter was born with right clubfoot (RCF).
This kid, my third unplanned caesarean section... and even though I had a laptop at the hospital and could get online, all I wanted to do was sleep.
I'd worked through the other two kid's hospital stays, and I didn't even open it up to do the research this time. I just wanted to sleep and I didn't care that my child's foot was bent, I was gonna figure it out later. Also the doctors didn't say it was an emergency.
I wasn't aware before she was born and they were sending the attending down to see her, she was gonna be fine. My mom worked for the Pediatrics clinic at the local Medical University at the time and all my kids were able to see the Attending at her clinic. I really was not concerned.
She was casted by the Ortho Specialty docs on the day we went home. And I only then did I take the time to look things up. I found the Yahoo group immediately. And after a short time discovered that my daughter's cast was incorrect (fiberglass), and also that there was a Ponseti Dr. here at our local Shriners Hospital. Which is actually across the street from the University Hospital we were already being seen, so it was an easy choice to go to them instead and get Ponseti Method. She was given 4 plaster casts, and everything was going along swimmingly!
Hole that finally showed heel rising up, shoe wasn't on properly and also not tight enough
Healed sore, after 1 week healing cast
Finally, no more sores, no more tears! Side sleeping with pillow propping up knees.
After we got into the Foot Abduction Bar (BnB) my little girl got a sore on her heel from a blister. They (the doctor, the orthotist shop, no one) couldn't help us, with all the padding and everything we tried there was no solution (see images to the left, or above for mobile). Still she had a huge quarter sized awful sore. I knew she had to wear the brace, so we worked through the crying but eventually she got a healing cast for a week.
That healed the sore, but then it came right back. I asked them to cut a hole in the back of her shoe... then suddenly I could see what was happening! She was slipping up in her shoe. And then it dawned on me that it was friction that caused the blisters and I had to figure out how not to allow her foot to move in the shoe. Talk about feeling like an idiot! I was the cause of all my baby's pain and tears!
I was able to figure out how to get her foot into the shoe and make it tight enough so that I couldn't see movement, and all of a sudden all the problems went away. What a wonderful thing it was, and so simple. Preventing friction prevented the blisters that became sores! Duh!
I passed that information onto other parents online for a few years while bracing, (see the original Tips & Tricks PDF) and our group NoSurgery4Clubfoot found new members as we all became great friends online. Our Yahoo group was helping other parents with the ins and outs of bracing and casting, and finding doctors and sources for travel and everything else related to clubfoot.
Today my adult daughter has great and mostly pain free feet, and no one could ever tell she had clubfoot. When her feet hurt after a long day, her FEET hurt just like everyone else's. Both feet equally sore. She only has one clubfoot.
We struggled with many parents coming to the group and saying their doctor said they needed surgery, and would not do the Ponseti Method. These parents were often told their kid's feet were too "severe" or that the Ponseti Method didn't work, or wouldn't work for their child. Most of these doctors couldn't have corrected a clubfoot non-surgically if they tried. Doctors simply had always done surgery and that was how they approached it for every foot.
It was a different time than now, and fortunately it appears most of these surgeons are either practicing the Ponseti Method now, do not treat clubfoot, or have retired. There still are surgeons who do surgery though, and many who are not properly trained (and don't care to become trained), and these physicians often will fail at casting and then tell the parent their child needs surgery.
Yahoo Groups officially shut down entirely December of 2020. There are new support groups on Facebook and other sources of information, because unlike back then... the Ponseti Method is the gold standard of treatment for clubfoot, finally. There are quite a few topic specific groups on Facebook and we encourage you to join any group that you like. For a comprehensive listing of all support groups, see our Online Support Groups page. There are not many local physical support groups but when we find them we will also list them on this website
In 2005 we were fortunate enough to get a donated set of Ponseti/Mitchell Boots and Bar. Which promptly made sores on my kid's heels. So we cut out the back end and talked to John Mitchell about big kid feet and heels which are nothing like infant heels that need a deep heel pocket. John sent us some casting material and foot impressions and we sent back some molds for him to help design the big kid shoes.
Those cut out shoes lasted her till she was 4 years old when we stopped bracing. I know we should have done another year to get the best results, but I knew what to watch for and she was doing very well.
So that's what happened, and then she grew up and hardly even remembers being in her brace, but what she does remember is comfortable and happy. When she looks at other braces she asks, "Why would you want that? It is not doing anything." What else can I do with that? We are happy for the Ponseti Method and want everyone else to have the best chance at good feet forever!
We love the progression of the Ponseti Brace/Mitchell Shoes since then and hope to help everyone who is doing clubfoot bracing with a shoe and bar design. We also support tips and tricks for other braces worldwide and would love some images and tips and tricks for all the other shoes/boots and bars out there. Please contact us for a spot on this website for links and information about your shoes!
See Darbi thank John Mitchell for her new shoes. Sorry for the 30 second videos, that's what I could record back in 2005.
https://www.youtube.com/user/frogabog/videos
Big kid heels are not the same as infant heels (clubfoot or not)
First Edition Ponseti Mitchell Brace
Darbi loves her new shoes!
Hole removing the heel pocket "ledge" that is essential for infant feet.
Clubfoot kids can be deckhands too!
