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 Mommas is a Facebook page for… well, you guessed it. I found it helpful to connect with other clubfoot 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!

Clubfoot

World Clubfoot Day — June 3rd, 2017

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I’ve written a lot about our son’s clubfeet and all the medical care he’s received as a result. June 3rd is World Clubfoot Day and we spent a lot of time reflecting on our journey so far and what our sweet boy has been through. He’s come so far!

We’re the lucky ones — we only live two hours away from a top-notch clinic at a Shriners Hospital for Children, we live in the first world and have health insurance and access to plenty of information. And, clubfoot is a congenital birth defect that’s relatively common and completely treatable. It’s not life-altering. But it could be, if we didn’t have access to all of this. If you ever feel like it’s hard to make a difference in the world, here’s one thing you can do:

  • Donate to MiracleFeet: they provide organizational, technical, and financial support to over 150 clinics throughout the world in order to provide treatment to children born with clubfoot. The treatment costs, on average, only $250 per child and is free or extremely low-cost for the families who receive it
  • Support Shriners Hospitals for Children

The Wyoming Shrine Bowl is next week. We attended a few years ago when we lived in Casper, but had no idea at the time it would become personal. Sitting in the stadium then, we never imagined we’d someday be beneficiaries of local Shriners’ fundraising efforts a few years later!

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We are lucky his birth defect is mild and treatable, but even then, it’s not cheap, and Shriners helps make it all so much more affordable.

For anyone who might end up here after receiving the initial diagnosis: there is a lot of joy to come, even though it may be hard at times. Just wanted to share some encouragement as we celebrate our own precious little one! ❤

Clubfoot

Clubfoot Update: Almost Out Of Daytime BNB Wear!

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We are now nearly done with 23-hour bracing, and it’s incredible how fast this phase has gone. We go in for a follow-up appointment this week and if his feet look good, he’ll be cleared to wear the brace for naps and nights only!

23-hour basically means your kid wears the boots all the time, but you’re allowed an hour of free time. We’ve been doing his free hour in the evening and usually take advantage of it to give him a bath. Some people do a half hour first thing in the morning and a half hour before bed.

I’m pretty sure I significantly over-prepared when we started out. I had moleskin, band-aids, sheepskin scraps (helpful for padding) and the MDOrtho website on speed dial, ready for bruising, blistering and general misery. Three months later, Jonas hasn’t had a single issue! The first few nights of BNB (boots and bar) were rough, but once we got through the adjustment, it’s been right back to normal — if not better.

His feet and legs look a little funny without the brace because they are squeezed for so long, but the nurse explained this is perfectly normal — skinny ankles and puffy-topped feet — the brace needs to be tight at the ankle especially, so all that baby fat has to move over! Here’s what they look like after 23 hours in the BNB:

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Those muffin-top legs crack me up. And his little feet keep the turnout and stay at a perfect 90° angle even when we remove the BNB because they’ve been in there so long! Over time though, this will all smooth out. I’m curious to see how it changes with less wear now.

As much as the 23-hour bracing phase has been relatively effortless, I’m truly looking forward to ditching the brace during the day. It makes baby-wearing pretty difficult (some people do it, but I couldn’t find a way to make both of us comfortable, plus it was mostly winter anyway and we weren’t out and about in nature for very long periods of time!) and then there’s the fact you have to hold your baby a little differently — no propping the baby on your hip, for example. And if I want to lay him on my lap with his feet towards me, I get gut-punched with his brace. Not to mention that thing is painful if he slams it down on you when you’re not paying attention!

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And that’s just why I don’t like the brace. Jonas has adapted because it’s all he’s ever known at this point, and he wields that thing like nobody’s business. He quickly learned to move both legs together for maximum effect, or how to set one foot and push off with the other, using the bar for leverage. He started rolling over just fine, approximately at the same age my daughter did if I recall correctly. I actually feel like his gross motor skills have been pretty advanced comparatively, he was rolling up onto his side pretty early on. I think having to lift the brace has strengthened his core quite a bit. But I guarantee he’s going to love the extra freedom and mobility once he gets it!

Funny story: I once tried to put him down for a nap during his free hour and he wouldn’t/couldn’t sleep — I think the weight of the bar is something he’s gotten so used to that it was disorienting to try to sleep without! I’ve heard similar stories from parents of older kids, toddlers crying about their bar when a parent forgot to put it on. It just goes to show that children really do adapt: if this is all they’ve ever known, it’s just life!

We tried to take advantage of those rare moments of freedom: bath time, walks, play, and our most recent discovery: swinging!

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I’m sure we’ll get to a point where putting the brace on will become a real struggle (he’s already getting pretty wiggly now that he’s rolling over!) but I am looking forward to a new phase, unencumbered. And yes, I just bought his first pair of shoes… and they are stinkin’ adorable.

Good luck baby Jonas, here’s to more freedom soon!

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Clubfoot

No More Casts!

Well it’s official: Jonas is done with casts and his feet are corrected! That doesn’t mean we’re done yet, but just look at those beautiful feet…

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Free at last! You can kind of tell his legs took the shape of the casts and there’s a teeny bit of bruising and wrinkling on the top of his feet, but overall he came out in amazing shape. (and it all normalized in a couple of days) Just for a little perspective, this is the difference six casts in two months made:

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Pretty amazing! Not that he seemed to mind the casts so much by the end, but I was certainly glad to be rid of the stress of not damaging them, not being able to bathe, worrying about making it back to the clinic before it was too late (you can only keep them on for so long before they grow out of them) and so forth. But by the end of this portion of his treatment, they had basically become an extension of his legs 🙂

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I’ve said it before and I’ll say it again: it is incredible how resilient babies are. Our sweet Jonas has had such incredible patience and calm throughout all of this. There were definitely rough nights along the way, but he amazes me.

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Funny side story: a grad school friend of Andrew’s was so kind and offered us a hotel stay using her points when we went down to the clinic this last time (it definitely adds up over time), and we were very grateful to take her up on it. So we drove down the night before, and while we were eating breakfast and getting ready to head to Shriners, Andrew came back from loading up the car to announce someone had broken into our car! My heart dropped when I realized I had forgotten to bring up my camera bag with us the night before — I never leave it in the car, but of course the one time I did… But get this: miracle of miracles, someone must have scared the thief away, because all they got was our snack bag! Joke’s on them, I can just imagine their face when they opened up what they probably thought was a purse to find… fruit snacks and a clementine.

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Really, it’s a whole series of tender mercies because 1) they didn’t take anything of consequence (I was almost in tears when I realized I had left my camera in the car), 2) Andrew happened to decide he wanted to load up the car before we ate instead of checking out after on our way out, like we usually do, which meant we were only a few minutes late to our appointment that morning 3) at least we only had to pay for the window and not the window and a hotel stay and 4) we got in pretty quickly to a repair shop that day, had a family lunch at Denny’s while we waited, and were able to be on our way. What a day though…

Anyway!

We got to Shriners and a tech swaddled him up and sawed off his last set of casts. I couldn’t wait to see what his feet looked like after all those weeks. (Adelina not so much apparently. Ha.)

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Jonas was perfectly calm as usual — something about the really loud, vibrating saw must be soothing!

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Then someone from the orthotics clinic came over to measure and fit him for his brace, and we went over to wash off three weeks’ grime.

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New sensations! Now he can bend his knees, but his legs need to move together. This brace (commonly called Boots and Bar –Mitchell boots and a Ponseti bar — or BNB) keeps his feet turned out and his heels pressed down to maintain the correction. Relapse is extremely easy when they’re this little and bendy, so that’s why he’ll be in BNB 23 hours a day, then only for nights and naps after about three months, until he’s four.

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It’s still a long road, but the added mobility and convenience are amazing! We can have new shoes shipped to us as he grows, he can have baths, we get to take it all off for some free time, the bar snaps right off when I’m changing or dressing him… life is pretty great. And the best part: we don’t have to drive to SLC weekly anymore. We’ll just go in to make sure everything’s on track every few months from now. That’s not to say we don’t love our doctors and nurses and techs who helped Jonas during all of this!

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Dr. Woiczik (above) was there at the beginning and end of casting, which is kind of funny because technically our doctor was Dr. Hennessey, but due to scheduling and travel issues it ended up being half and half exactly. We trusted both of them completely though, and we were in such excellent hands. Both of them were extremely professional and caring — I was really impressed for example when we came in for our second cast and Dr. Woiczik popped in to see how the first week had gone even though our appointment was with Dr. Hennessey. There was also a PA named Jamie who assisted at times, I’m assuming she was completing a residency because she was training under other doctors, and she was also great. It gave me a lot of confidence that they coordinate on cases and work together.

I’ve mentioned before that I’m on a Facebook group for clubfoot moms and I’m absolutely shocked at some of the stuff you see out there — doctors treating clubfoot with improper techniques (the Ponseti method is the only proven treatment) or variations of the correct treatment (like only casting from the knee down, which won’t cut it at this age) that end up making their cases worse, clinics that don’t even use proper orthoses (“oh just buy a cute pair of shoes you like and we’ll screw a bar onto it!” <– not joking, that’s a real quote), and so forth. Feet that are absolutely not properly corrected by doctors who claim to be Ponseti-certified, repeat tenotomies and surgeries at later and later ages… It’s sickening. I am SO grateful we happened to live relatively close to not only a good care provider, but also a Shriners clinic, which means we don’t have to spend a fortune on the boots and bars (they have a special program to pay for them after charging our insurance, which is such a huge blessing).

I used to sort of roll my eyes at “clubfoot awareness” because I thought, “OK, tell people clubfoot exists, voilà. Do we really need special ribbons and stuff? We’ve already found a cure/treatment, this isn’t exactly brain cancer!” But I’m realizing what’s still needed is awareness that not just anybody can fix clubfeet — and certainly a community of people who know what it’s like helps. The Ponseti method is time-tested and it’s how it’s done, period. Anything else is bad news (until we see studies on any other techniques), and apparently a lot of doctors think they can just make it up as they go, and parents and children are suffering for it. If you are starting off treatment for a clubfoot infant, you can find a list of providers here. Some excellent resources for parents — compiled by a group of parents with a lot of combined experience — are also found here.

Anyway, off my soapbox for now. And there we have it: one happy boy (three months already?!), and a family that’s breathing a little easier! Onward and upward!

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Clubfoot

Final Set of Casts and Tenotomy

Well, final set assuming all goes well. But our treatment has been textbook so far, and I’m incredibly grateful we haven’t had to deal with complications. After cast #2 it was really just smooth sailing. We all got used to handling him with them on, diaper changes and all, and Jonas doesn’t even seem to notice them anymore. Usually the night/day after casting might be a little extra rough but nothing really that crazy. Plus the kid is still a newborn, remember? That’s a crazy of its own anyway!

This last and sixth set of casts was the hardest emotionally though, because this time the doctor performed the tendon lengthening procedure (or tenotomy). I explained it before, it’s basically just a quick snip of the Achilles’ tendons with a scalpel, but I still felt so bad for him! That does not sound pleasant at all.

To add to our stress, Jonas was sick that week and it didn’t even occur to me until the morning we were supposed to drive down that it might be an issue. No fever or anything, and he was only going to have a local anesthetic but still, his immune system was already fighting on one front. I called the clinic and the nurse coordinator said we should be fine, so we packed up and drove down anyway. Oh, and here’s the other major stressor we were dealing with that day: it was the day after a big snowstorm. The roads had been plowed, but that did not mean they were clear.

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Yeah… lots of fun. This is one of the challenges with living in a low-population state in a rural area — there just aren’t enough plows to cover these vast stretches. The trip took us 3.5 hours instead of the usual 2 because we had to take it veeeeery slow. I was a ball of nerves half the trip, doubting whether we should have set out, but we definitely felt all the prayers from our friends and family on that trip. Then, we crossed the state line and roads were clear again! Phew!

So to recap: a harrowing trip over a frozen tundra, two sick kids, and surgery. What a combo. We made it a little bit late but I had been updating the clinic the whole time, plus it turns out there were several no-shows that day due to the weather, so they were able to get us in and taken care of. (Shriners staff are incredible and so understanding, we will forever love them for what they’ve done for us and our son!)

I finally relaxed a bit. A technician removed his casts, we gave him a bath, and then she applied a numbing cream to his heels and we were sent to the lobby to wait 30-45 minutes.

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It was so strange to sit there and hold him in my arms without the bulk of those stiff casts, and to see more of those sweet little toes for a change. Jonas promptly fell asleep after nursing and I enjoyed a little bit of calm while my husband took our daughter to the cafeteria for some lunch.

Then the doctor came out to take him in for the procedure. I said a silent prayer he wouldn’t be too miserable. It was a matter of fifteen minutes before a technician came back out to bring us back for the casting. The doctor was rocking him, and he was still asleep! She said he had cried some but not as much as babies usually do, and clearly he wasn’t too traumatized because he was snuggled up in her arms. What a reassuring sight!

The hardest part is what came next. Putting on plaster for casting isn’t painful in and of itself, but watching him scream while the doctor stretched his foot into position while it dried was heartbreaking. I was right there keeping him calm, but I could tell it was painful for him, despite the numbing cream and shots. His doctor explained there’s only so much the anesthetic can do when you’re manipulating and stretching like that.

It’s hard to stay strong for your little ones sometimes, but you have no choice, so you hold them and let them cry.

The casting was brief though, as usual, and soon he was fast asleep again. We wrapped him up into his car seat, scheduled our follow-up appointment, and headed to a nearby hotel to spend the rest of the evening. (No way were we heading back on those roads in the dark!)

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The night was rough; being out of the normal routine makes for a fun bedtime with a toddler… but Jonas did quite well all things considered, and the next morning, when we got home and were able to relax again, he was all smiles.

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This kid! In fact, you would never know he’s had a minor surgery since then. His nights have been pretty much the same as usual, he’s had some fussiness at times, but truly, it’s incredible how resilient babies are. I am so glad we did push through to make it happen last week, because this week we were hit with Snowmageddon 2017 and there’s no way we could’ve made it. I’m glad I was able to hunker down at home with our sweet children and just wait it out, waiting for Jonas’ feet to heal and regenerate.

And that 90° angle? That’s a normal foot position. It’s the first time his feet have ever been able to reach this position. After three weeks with this cast, if all has gone well, we will be DONE with casting, and his little feet will be fully corrected! Then, it will be on to bracing to prevent relapse for the next few years. In the meantime, we are loving NOT having any more weekly trips to the clinic. Here’s to new feet for a new year!

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Clubfoot Casting #3 — Cast Removal

Another successful visit, and we made it in and out in between snowstorms: talk about impeccable timing! I’m starting to notice a pattern: the night after casting is typically pretty rough sleep-wise (only sleeping 20-45 minutes at a time… yikes!), but I wonder if it’s also partially due to the disruption of all the travel, interrupted naps, etc. The day/morning after can be a little iffy too, so I just don’t plan to get much done. Otherwise he really doesn’t seem to be too upset about all this — it’s amazing how resilient babies are!

I took a little video this time around. Cast removal sounds scary — that’s a noisy saw! — but it’s really not a big deal. Jonas is super chill about it, probably because it’s great white noise.

How about that awesome spit-up nose bubble at the end?! Ha ha. Good thing it was bath time next!

His feet are coming along nicely. It’s a little sad to see the bruising and creasing, but most of it is just dried/dead skin, etc. so really nothing too scary.

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The doctor thinks at this point he’ll likely have the standard six casts, so that means he’ll be done with casting (fingers crossed) by the end of January! And then we start over with a new experience: boots and bar (brace). It’ll be nice to be able to give him full baths at home though 🙂 And I’m pretty sure he loves the freedom… as soon as those casts were off he was just content as good be to kick and wiggle around — hence the blurry photo!

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Three casts down, three more to go (hopefully)!

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Clubfoot Casting #2

We made it through a week with casts, so it was time to head back for more! More watching the forecast like a hawk, this time with an appointment change so we could get past the mountains before snow hit, and it was time to drive down to Salt Lake City again. This time we made it in a day and generally travel went smoother — Adelina even fell asleep on the way home!

So this is what Jonas’ poor little feet looked like after a week in casts.

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The photo doesn’t actually look half bad, but his poor ankles were quite purple and bruised. He handled the process pretty well though, and has generally taken to his second set of casts quite well compared to last time: I guess we’re all getting the hang of this.

Here’s how it works: the nurse uses a saw that has two discs that vibrate and shred the cast — they are pretty much impossible to cut skin with, the nurse demonstrated by scraping it on the palm of her hand!

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Then she splits the casts open, which she explained can be a little unpleasant since the baby’s knees get stiff from holding that position for so long. He didn’t see too upset though, and generally it went easily enough.

Then you get a chance to give your baby a proper bath — poor kid can only have sponge baths otherwise. Adelina was very interested in helping with that! (Yes, she was in PJs… we literally grabbed her out of bed at 6 AM and got in the car. Long day!)

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Honestly the toughest part was putting on new casts: you could tell his poor feet were pretty sore and he did not enjoy having them handled so soon. But even then he calmed down after a little while and pretty much fell asleep.

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We decided to keep his first casts: someday it’ll be pretty neat to see how far he’s come and how he’s grown.

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And that was pretty much it — we were on our way home after that! And I’m hopeful at this point he won’t need the maximum amount of casts: the doctor said his feet were stretching nicely at this point, so we’ll see how it goes! One can hope, right?