Our clubfoot experience

As I'm pretty sure everyone who reads this blog knows, Eli was born with a clubfoot. At his appointment a couple weeks ago, we got the great news that he no longer has to wear his brace during the day, except for naps! I was pretty sure that would be the case, but I was really hesitant to get my hopes up! He is so happy to be free which makes us all happy. Plus, now I can kiss those little baby toes whenever I want to. I've missed that.

Now that we've moved on to the next stage of this treatment, I thought I would share a little bit about our experience and answer some of the questions we get.

First of all, let me explain what clubfoot is. Basically, it is a congenital birth defect that causes the foot to turn in, kind of like a golf club, because the tendons are too short and tight. It's fairly common and usually can be fixed without complications (yay!).

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I found out the day after my 20 week ultrasound during an unexpected phone call from my OB/GYN. I went in for another ultrasound just to confirm it, and then had another from a specialist who looked for evidence of other complications, since clubfoot can be a sign of problems like spina bifida.

I knew nothing about clubfoot before that phone call, but in the weeks and months that followed I did lots of research... and lots of worrying too. Even though his ultrasounds looked good we couldn't be 100% certain it was an isolated clubfoot, and even if it were I was worried about the treatment. Casts to stretch out the tendons being put on my tiny baby? Probable surgery? A boots-and-bar brace we would be dealing with for a few years? None of that sounded very fun. On the bright, it was something we could fix. The treatment usually works. That made me feel a lot better.

From what I have gathered, the typical treatment for clubfoot goes something like this:

1. Weekly casts (4-6, on average) that gradually stretch out the tendons and align the bones properly
2. Possible surgery in which the Achilles tendon is cut all the way through. When they are little, it just grows back, and that completely blows my mind. This surgery seems to happen most, if not all, of the time for clubfoot patients. 
3. One final cast after surgery which stays on for three weeks
4. A boots-and-bar brace must be work 23 hours a day until they are cleared to just wear it when they sleep. From what I've seen, there are a lot of different opinions about when the brace time can be reduced, but it seems like it's just about always before they start really trying to stand/walk.

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Here's what Eli's treatment has been so far, in a nutshell:

1. Four of the weekly casts, beginning when he was just under a month old (March 17). Only his left foot was "clubbed," so obviously he only needed one cast. I'm thankful we needed less casts than average since we had to drive 1.5 hours to Eli's pediatric orthopedist (if you are in AZ and looking for someone, email me for his doctor's info... we love him!), plus the casting process wasn't a lot of fun. My job was always to hold him down since he would kick and scream as the doctor and technician turned his foot out and applied the cast. It was so sad, but he was usually okay after that, especially after getting some Tylenol and snuggles and milk. Sometimes he was a little fussy for a few hours though. He had a "soft" fiberglass cast, which meant I could peel it off myself, with a little elbow grease, before each appointment and give him a bath.
2. Surgery (April 15). This is a very minor, quick surgery that only required one stitch, but they did have to put him all the way under. That was probably the scariest thing for me, especially since he wasn't even 2 months old yet! It went very smoothly though, of course, and he was back to his normal, happy self by the next day.
3. The final cast that stays on for three weeks got put on right after surgery, which was nice since that meant they could do it while he was still under anesthesia. Much more comfortable for Eli, and easier for everyone involved.
4. Eli got his boots-and-bar brace, the thing that we think looks like a mini snowboard, on March 7. We all liked this much more than the casts! He was able to bend and straighten both knees and enjoy an hour of freedom every day. He continued to wear it 23 hours a day until his last appointment on October 1st, and now only wears when he sleeps. 

I already answered most of the questions we are usually asked, but here are a few that I didn't cover yet:

What causes clubfoot?

Nobody knows for sure, although I was told it is more likely when they mother smokes or drinks during pregnancy (I've never done either, just to clarify... ha!). It just happens sometimes, although making sure you get enough folic acid might help prevent it. I was taking prenatals though, so... who knows. There is also some speculation about it happening if there isn't enough room in the womb for the baby to develop.

Is it painful?

His foot did look pretty odd before treatment, so I can see why people would be worried about it hurting him, but it was obvious that it didn't. The only painful part happened when we started bending it back into shape.

Will he be able to go canyoneering with Dallin? ;)

Oh yeah. His left foot should work just as well as his right when he is older, although it might be a little shorter and fatter. Fun fact: there are several famous athletes that were born with clubfoot, including Mia Hamm and Kristi Yamaguchi.

How does it affect daily life? What changes did you have to make to get normal things to work?

Honestly, it isn't that much different than it would be otherwise. I thought life would be a lot harder. We didn't have to make a lot of changes, but naturally there were some adjustments that had to be made. For example:

• Swaddling: It was no problem with his casts, but the brace made it a little tricky to wrap him tightly enough. I'd either use a bigger blanket (I like the size of the Aden and Anais muslin blankets a lot!), or – better yet – use a HALO SleepSack. These are perfect because they allow you to have their torso tightly swaddled even with the bulk of the cast/brace. 
• Clothes: I was a little worried about this, but it ended up being fairly easy to find clothes that would work. I never had a problem getting normal stretchy baby pants over the cast, and just a couple of pairs were hard to slip over the boots on his brace (the bar can be removed for this purpose, which is so nice!). Rompers were a little easier with the brace, but it wasn't a huge difference. It can be a little hard to find tall socks, which he needs for his brace. The cheapest ones I've found are the cuffed ones at Walmart which are pretty tall when they are unrolled, but I prefer these ones from Amazon since they are thicker. 
• Diapering: Since his casts went all the way up his leg, the gauze would always soak up some poop. That was pretty gross. No matter what I tried it always happened. I just made sure to rub some diaper cream between the cast and his skin or else he would get a rash where it rubbed. Once he got the brace, diaper changes became super easy because it functioned as a pretty nifty handle to keep his feet out of the way! 
• Other than that, everything was pretty effortless and his casts/brace didn't get in the way very often. He always seemed comfy in his carseat, bouncer (where he slept fairly often at first), crib, Bumbo, booster seat, stroller... you name it. Just not a baby wrap since his legs couldn't spread out the way they need to. 

And here are some pictures of my favorite little gimp! 

These first two pictures were taken the morning of his first cast.

These pictures show the progress we made over two months of casts. I love how happy he is in the brace picture. :)

And here is what his little toesies look like now! 

Pretty much good as new! It's amazing what you can do with modern medicine and babies that are still made out of rubber! :)