Clubfoot

So You’re Expecting a Clubfoot Baby: Thoughts, Tips, and Resources

Hello there! If you just found out the baby you’re expecting has clubfeet and googled “clubfoot” in a panic, welcome to the club! I want to say one thing first and foremost: you are going to be OK. And your baby will be happy, healthy, and will thrive! You can do this! And, congratulations on your precious arrival! ❤

When we found out that our son would have bilateral clubfeet, we were understandably worried. I don’t think I’d ever even really heard of the condition. And what scared me most was that when doctors see one problem, they’re immediately looking at other parts of the body: could he also have trisomy 18? spina bifida? Could he have a cleft palate too? We ended up opting out of genetic testing (honestly, it’s really expensive, and it wasn’t going to change the outcome for us regardless, so we didn’t see the point) but we were sent to a fetal ultrasound specialist who took a good, long look at baby’s brain, cranium, palate, kidneys, heart, spine… and didn’t see anything out of the ordinary. It wasn’t a guarantee, but I felt sufficiently reassured: anything else, we would face when the time came.

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And by the way, don’t panic: clubfoot is actually a pretty common birth defect, and the majority of cases are just isolated clubfoot, nothing else. The odds are on your side here. (more)

We certainly mourned some things: I worried how casts and BNB would affect breastfeeding and positioning, for example. (they didn’t) I was sad about those cute, utterly pointless itty bitty baby shoes he wouldn’t wear during those first months. And I worried about how we’d dress the little guy — but I came across some blogs and a Facebook group that was so helpful. So I want to share some of the tips and tricks we learned along the way, and most of all, I want to tell you this: EVERYTHING WILL BE OK. Get your kid a Ponseti-trained orthopedist, and you will be in good hands. You’ve got this! And enjoy that sweet child!

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One more thing: this is likely a small, small moment in your child’s life. It won’t define your child throughout their life. It isn’t life-threatening. It’s so, so treatable. It’s tough at first, but it will all be OK, and it’ll soon be like a bad dream. (I should add that there are complex cases — I don’t mean to make everything sound rosy and easy. Some kids end up relapsing multiple times throughout their life. But many, many children are treated as infants/children and then move on with their lives. This method works. Please don’t make yourself crazy by going to the worst-case scenario: the odds are on your side for everything to be just fine.)

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These little ones are so resilient, you’ll be amazed at how quickly casts or boots become their new normal. And it becomes your new normal too; at 14 months now, putting on and taking on Jonas’ BNB is just part of the naptime/bedtime routine, just like zipping up his sleep sack or turning on the white noise.

Don’t misunderstand what I’m saying here: of course we need take the time to mourn the things we’re losing. It’s perfectly normal and healthy. And I can’t imagine having to go through this all with your first child, because EVERYTHING is new with a first child. Hang in there. And know this: there’s plenty of hope ahead. It will go by SO fast, and you can come away with awe and gratitude at the incredible medical treatment you have access to, and maybe a little extra compassion for other parents of special needs children. It’s certainly what I’ve gained from this journey. ❤

You can read more about our experience with our clubfoot son here.

And please keep in mind: I am not a doctor. I am sharing what has worked for us in our situation. I’m one parent of one clubfoot child. It goes without saying that if you have any concerns, please talk to your (qualified) orthopedist. Also, our clubfoot cutie is only one year old, so I’ve got nothing for you on getting a four-year-old to sleep with a brace! But I do link to other great resources below.

So here we go into the nitty gritty: 

Choosing a doctor: I found ours by googling our location + clubfoot treatment, and we were lucky enough to live a few hours from a clinic that specializes in clubfoot treatment. I still made sure to check the Ponseti website for our doctor though, and she was on the list! We go to a Shriners hospital and they are amazing — especially because we’re able to get help paying for all his boots through their program as he grows out of them. Something to consider if you’re struggling with the expense of all this. Also, they were awesome and let us come in to visit with the doctor and ask questions while I was still pregnant (we even saw another baby getting casted).

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Expense: I can’t remember exact numbers now, but I remember the total cost of his treatment in the casting phase (casting appointments and tenotomy) was approximately what the hospital birth cost after insurance, if that gives you ballpark figure. I want to say around $2,000. It was really a bummer that his tenotomy happened after the new year, since we had hit our deductible the year he was born… so if you’re lucky enough that things work out in one calendar year that will definitely keep expenses down!

And speaking of expenses: you can buy the boots for BNB directly from the manufacturer for about $250. The hospital/clinic bills them to insurance three times that (or more), so if after insurance you’re still paying more $250 for them, it could be worth it to go straight to the source and bypass insurance. Insurance absolutely should cover all of this by the way, if they’re refusing to pay for boots they may be coding things incorrectly. Work with your doctor’s staff, and fight them on this. If you’re struggling to pay for boots and bar and you live in the US, get in touch with the Clubfoot Shoe Exchange, they take donations of used boots and pass them on to people in need for free. There are some wonderful people in this clubfoot community!

Starting treatment: the general rule is 2-3 weeks after birth, but sometimes circumstances make it much later (scheduling difficulties in clinics, having to travel for care, a NICU stay). We started at three weeks I believe, because the clinic couldn’t get us in sooner. So getting a hold of them soon is helpful. And just a thought: take a picture, impression, cast or something to remember those sweet, tiny feet by. You’ll want to remember it. We made this Christmas ornament the day before his first casting ❤

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Casting appointments: be prepared with a pacifier or bottle (I found it really awkward to hold him in a good enough position to nurse while doing the casting, but some people do that as well) to keep your baby calm, and plenty of sushing helps too. I would just caress his head/face, keep the binky in, and hold him close and shush and I could usually keep him relatively calm while they were messing with his feet. We would give him a dose of baby Tylenol when we arrived at the clinic so by the time we were casting it was sinking in, and we’d use Tylenol for a day or two after too just to ease things. He wasn’t crazy fussy but the first casts or two were a little tough. Tylenol seemed to help. And then, it just became his new normal!

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Removing the casts sounds scary because there’s an electric saw involved but it’s actually designed only to rip the plaster. (Some doctors do nylon-type casts, so that’s a different story, I believe they’re soft and just unwrap. I have no experience with that though.) And the noise really doesn’t bug the kids — consider it white noise 😉 They say they might cry when you finally remove the cast since their knees have been stuck in a position so long, moving them or stretching out could be uncomfortable, but Jonas never did. He was pretty stoic about it. See how it’s done below:

Tenotomy: some kids may not need this, but it seems to be relatively standard procedure. It is super quick, but it’s certainly nerve-wracking to let a doctor cut into your baby’s foot! (this website describes the procedure) That being said, it happened so fast, and I knew he was in good hands. What was tough for me was the casting immediately after. They came back out to get us and I held him while he cried through the casting. The doctor had just cut his Achilles’ tendon and was now stretching his foot into position — even with the numbing cream, it clearly wasn’t pleasant for him. (some places do general anesthesia, others just a local one; ours did local and as rough as it was I would have been nervous to put an infant under general anesthesia so I was happy with their way of doing it)

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I’ll be honest, this was the hardest part of the entire thing for me. It was the one time he was so clearly in pain. BUT. You grit your teeth, you hold them, and it’s over.

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Waiting for the numbing cream to act… and after getting back from the clinic.

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He had a good nap on the ride home, we gave him plenty of Tylenol, and the next day it was as if nothing had happened. He truly bounced back SO fast. So, take courage. You’ll both get through this, even if it is hard. (I wrote about the tenotomy back here)

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Jonas in his post-tenotomy cast, the next day: all smiles! The last cast stays on three weeks, by the way, to give the tendon time to heal and lengthen. They might get a little tight but just watch those toes for redness or purple — if they get purple, get to your orthopedist.

Watching out for slipped casts: speaking of toes, it’s helpful to take a picture of their toes right after casting so you can compare if you think the casts might be slipping off. It does happen, but we didn’t have to deal with it, luckily. (And by the way, if it’s happening a lot, that’s a red flag that you need to get a better doctor.)

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He definitely got some impressive muffin-top thighs though! Also totally normal.

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As a side note, some people like to keep the casts as a souvenir of sorts — we just kept the first and last ones.

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Their feet look a little raw in-between casts, but it’s so awesome to see the improvement little by little. You should also get a chance to bathe them before the next cast is put on at your appointment.

And by the end of casting, this is how perfect his little feet came out!

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Going into BNB: the first few nights were rough — he had to adjust to a whole new way of holding his legs and feet after being in stiff casts for so long, I think he must have been uncomfortable. Plenty of nursing (and more Tylenol), and then after a bit things went back to normal. Some people use a bar cover to protect crib rails and other family members’ extremities (seriously, don’t be in the path when that thing comes slamming down!) — I made one for him in the 23-hour phase, but after he was down to naps and night it felt a little pointless since he’s in a sleep sack anyway. There are some cute ones out there though!

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First day in BNB!

 

What to wear: When your baby is in casts, getting things on and off their legs is tough. I’ve heard of people making footie pajamas work by sizing up, but even then I always felt like it was a huge pain because it’s hard to pull over the rough casts, etc. So frequent diaper changes (which are a reality for newborns, including at night) are a huge pain with pants or footie pajamas. We just put our son in onesies and then covered the casts with legwarmers, and it was so easy! There are tons of cute legwarmers out there (babyleggings always has some deal going for five free pairs, you just pay shipping) and that way diaper changes are easy. Our son even slept in that! Plus that way you can protect the casts from knocking against each other too hard and from blowouts… yup, those are fun!

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The funny thing is most people never even noticed he had casts! I wasn’t specifically trying to hide it or anything, but if you are sensitive about people asking questions, the leggings make for good camo 😉

Also, don’t mess with short socks — you need long, thin socks that won’t be too bulky or bunch, but can also be tall enough to fit over the boots. (there’s a tongue at the back that goes up pretty high, it can’t be comfortable to have a short sock digging into your calf underneath them or have your foot against silicone for long periods of time) We like to use triple roll socks, they’re thing, stretchy and perfect for BNB. Walmart’s garanimals brand works great! And I usually change out his socks at night and in the morning, so have a good amount on hand. Some people do cute knee socks, but I don’t imagine they’re quite as comfortable. Also, it helps to fold down the top of the sock over the boots to keep any elastic from digging in.

Babywearing: it’s definitely doable. A soft wrap carrier was easiest at the casting stage to mold to the odd shapes of the casts, and it definitely calmed him down.

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When he was in 23 hour wear with BNB, I was worried about pulling his ankles and hips at odd angles so I just didn’t — except during our free hour. But there’s a whole Facebook group dedicated to babywearing with clubfoot babies so go there, they’re better at it than me! Honestly those first few months we were in blizzard conditions and frigid temps so there weren’t many outdoors walks happening, ha! Now, he loves our carrier (and so do we)!

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Ha, my husband is amazing!

What their feet will look like: Jonas has some crazy turnout as you can see above. It’s totally normal, the brace keeps them over-rotated to prevent relapse. It hasn’t seemed to keep him from learning to crawl and start walking. In fact, I need to get him in dance or figure skating or something because that turnout is a huge advantage, ha! You’ll also notice the top of their foot is a little extra chubby, as well as their calves above the boots. It’s just the tightness of the ankle brace pushing the fat out of the way. Also totally normal!

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His feet look a little red above, but this was earlier on in bracing — they look less red nowadays. And those folds of skin on the outside of his ankle eventually go away, it just takes time — consider how their feet were at first, totally turned in, that’s a good amount of extra skin on the outside once they’re corrected!

Sleep: I’m just going to say this, and you may already know it, but if you don’t: some babies are crappy sleepers, they just are. My first was. We tried EVERYTHING, but at the end of the day she did what she wanted, which was not sleeping much. Our Jonas, he was a much better sleeper. And I feel like bracing doesn’t affect his sleeping at all. He’s perfectly adapted and positions himself comfortably and he’s good to go. So just don’t be so quick to blame bad sleeping on the BNB. It could be that, but it could also just be that your baby doesn’t like to sleep. (Why do babies hate sleep?!) So hang in there, but by all means, brace on. Don’t let your kiddo relapse, it is so awful to have to start all over. My mother-in-law called us the other day because the child of an acquaintance of hers had to start all over with casting, surgery, etc. at FIVE years old. Because the parents got sloppy with bracing. Don’t do that. Stick with the program. (I’m not saying this in an accusatory tone, by the way. I know it can be tough. But it’s so important to be consistent and stick with it. You are doing your child a huge favor by bracing properly.)

The change you will see early on is incredible. It is worth it! You are on your way to a happy, healthy, thriving, very mobile baby!

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(He was so proud of himself for getting on that chair by himself. And, he is SO close to taking those first steps right now! I’m excited!)

Websites & Other Resources:

Ponseti International this is the official website for the Ponseti method — there is a “french functional method” too but you probably won’t see it outside of Europe (and interestingly, our orthopedist, who lived in France, says it’s kind of evolving to become more like the Ponseti method. You can do plenty of googling for more on this all, but bottom line: find a Ponseti doctor, don’t just go to a random orthopedist. They will not have the experience or qualifications, even if they say they can do it. Don’t risk it — they can actually make your child’s feet worse with improper casting, and then you need to start all over again and potentially deal with surgeries to correct the mess. The Ponseti website has a list of Ponseti doctors here)

Clubfoot Hub is an awesome website put together by clubfoot parents who have a lot of experience with the condition. Tips and tricks galore, resources on finding a good doctor, etc. And some lovely encouragement too. Plus great recommendations for products!

Clubfoot Connection is a Facebook page for… well, you guessed it. I found it helpful to connect with other clubfoot parents (it’s mostly moms), it’s nice to know you’re not alone! That being said, a word of caution: you’ll also hear/see horror stories. Don’t let that freak you out: there are many, many cases that are perfectly straightforward. I heard so many stories about blisters and rubbing in BNB and it NEVER happened for us. And it never happens for many people. After being on that page a good while, I realized many (not all, but a lot of them) of those cases are either due to improper treatment to begin with (again, get thee a Ponseti doctor!) or user error/lack of information (not to mention the members from countries that may not have access to good treatment in their area — and on that topic, MiracleFeet is an amazing organization which helps bring treatment to areas that need it). And yes, there are complex cases as well. But don’t let it get to you.l

The Clubfoot Store has a super cute bracelet I’ve been eyeing for a while!

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They also sell awareness t-shirts, gift items, and bar covers. There are several people on Etsy who make bar covers too.

One clubfoot mama who is a seriously talented artist made this beautiful, whimsical children’s book about clubfoot, and get this: the main character is called Jojo! (we use that nickname for Jonas all the time) I love it! The illustrations are gorgeous and the story is a sweet, imaginative way to make bracing feel special.

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And finally, Daoust TribeWriting Mother Fashionista are two clubfoot bloggers/IGers that I enjoy following 🙂

There you have it! I hope this was helpful. Hang in there mamas, you’ve got this!

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