I’d be lying if I said that the first year of parenthood was smooth sailing. From our 20-week ultrasound on, it has been nothing but an emotional roller coaster. Of course, most of that is just parenthood at its best. But when you throw a wrench into everyday parenting, whatever that may actually look like, it only becomes exponentially more difficult.
Finding out that our child has clubfoot was not easy, and neither were the first few months of his life. But I have to say that I feel that the hardest part is behind us. I’ve really reflected on this first year as a clubfoot mama and thought about what things you might want to know as you look at the journey in front of you. After reading, you will know more about:
- What clubfoot is
- How clubfoot is treated
- Everyday life as a clubfoot mama
- The 1-year check-up
- and more!
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What is Clubfoot?
If you are just finding me through this post, let me give you a little bit of background of what clubfoot is.
Clubfoot is a congenital birth defect, which just means that it is present from birth. It is actually a very common since 1 in 1000 babies are born with it.
Clubfoot can affect either one foot or both feet. In our case, Ethan had bilateral clubfoot, meaning that both feet were affected.
The condition makes the feet turn upward and inward, making the foot look like a golf club. The shape and severity can vary from case to case, but all bones, muscles, and toes are present…just a bit misshapen.
How is Clubfoot Treated?
You can compare clubfoot treatment to straightening teeth with braces.
Clubfoot Seriel Casting
First, your child will be treated with seriel casts. Every week, we went to the pediatric orthopedist to have casts put on that slowly flexed Ethan’s feet into a normal shape. The casts are full leg casts because chubby baby legs can cause a boot cast to slip right off.
This phase can take 6-8 weeks until the feet are in the proper position to maintain. We brought Ethan to the orthopedist 6 days after he was born for his first casting. We only had 4 weeks of casting because Ethan’s feet were highly flexible (come to find out, he has hypotonia too..but I will dive into that another day).
Tenotomy: The Clubfoot Surgery
The next step for most clubfoot patients is to undergo a very quick surgery called a tenotomy. While we celebrated Ethan only having to go through 4 weeks of seriel casting, the downside was having a surgery at a younger age. He did great, but we were a wreck!
What the tenotomy does is lengthen the heel cord, by cutting the Achilles’ tendon. This allows for the foot to have a greater range of movement. Our surgery was only 30 minutes long for both feet. So if only one foot is affected, your surgery may be even shorter.
Ethan was in casts for another 3 weeks straight after surgery just to ensure that the cord healed properly.
Boots and Bar
This stage of the process is like the retainer phase of teeth straightening. Your braces are off, but to maintain those newly straight teeth, you have to wear your retainer nightly to ensure they stay that way!
Clubfoot is the same thing. Without the boots and bar, the feet can turn right back to their original position causing you to have to start treatment all over again. The child wears the bar full time for about 3 months and then part time for an additional 2-4 years. But all cases are different and your orthopedist will share the best treatment possible for your little one.
If you would like to read more about clubfoot in general, please check out my Ultimate Guide.
Clubfoot After One Year
Looking back at Ethan’s first year of life, it seems like those first few weeks of casting are a blur. I can barely even remember what it was like to have those casts.
I remember the worries I held onto like how will I breastfeed or change a diaper with those bulky casts. But it all seems so trivial now, although those emotions are real and validated! We just did it because that’s all we knew. We didn’t know what it was like to change a diaper without a cast or a bar until Ethan was 5 months old…and we actually found it more difficult without!
But no matter what, those first 12 months were memories that we will hold onto no matter how distant they seem. Here’s exactly what that first year looked like for us.
Like I mentioned, Ethan stopped wearing his brace full time when he was about 5 months old. We didn’t know what it was like to have a child without restraints on his legs. From his first week of life he was always in casts or his bar. This was our normal.
None of this obviously affected Ethan because he didn’t know any different either. He found ways to play with his bar like banging it on the floor or moving it side to side. When it was off, we noticed him become a little bit more adventurous. But I have to be honest, it could have just been his age at the time that the brace came off.
He still wears the brace at night and during naps. For Ethan, this is about 13-15 hours per day. Our doctor said his recommended number of hours for Ethan was 12 hours per day. So even though we knew that just his bedtime sleep would be enough, we knew that keeping the brace a part of any sleep routine would be helpful for him. As of right now, he doesn’t mind getting his brace put on and actually helps us by holding his feet out for us.
Our daycare has been extremely accommodating with Ethan’s brace. They were eager to learn how to put it on properly and ensure that they were doing whatever was in his best interest. After we showed them how to use the brace, we felt very comfortable trusting them to take care of it on a daily basis.
Physicians claim that a child who receives prompt treatment won’t experience any delays in milestones. While I noticed that Ethan was still within the normal range for the physical milestones, he definitely took a little longer to master those skills than his peers.
Even though he is extremely strong (you would be too if you had casts and a heavy brace on for the first 5 months of your life!), his coordination seemed to be a little slower, which made him take a little bit longer to master a skill.
He focuses a lot on his gross and fine motor skills and will find ways that make sense to him to get to where he needs to be. For example, he was doing the worm for a full month instead of crawling because that was what made sense for him to get from point A to point B.
Now, at 15 months, he probably could be walking independently, but he is timid about his abilities and so he has to have two hands on something to want to move. When using a walker, he can completely stand independently while he picks the walker up off of the ground to change directions. But, he won’t just hold one of my hands to walk because he has to have both.
We applied for our state’s early intervention program before Ethan was even born. We wanted to ensure that he was getting the services he needed to help him in any way possible.
Although the doctors didn’t feel this was necessary, I still took it upon myself to reach out and get a screening. Because of his diagnoses, he was able to be a part of the program and received an IFSP (Individual Family Service Plan) for physical therapy at 1 month old.
Still to this day, after his first re-evaluation, Ethan is still able to see his physical therapist twice per month. She works on strengthening the muscles in his ankles and helping him feel more confident to achieve those physical milestones. She has given us great ideas and support to help our family learn the best ways to support Ethan at home.
I think it is definitely worth looking into getting an evaluation for your clubfoot baby through your state’s early intervention program.
Of course every parent experiences a poop explosion at some point during their first year of parenthood. But now imagine that your child is in casts (that aren’t waterproof by the way) and that some of that poop is now on that cast that has to last a full week or more. Or how about that brace that has cost you about $1000 and needs to last a few years?
Talk about a stinky nightmare!
Cleaning that up was no fun and stains were inevitable, so we decided to take preventative action. We had a few favorite things that helped us make sure those casts and precious brace were protected from poop-splosions. These were an absolute life-saver!
One-Year Check UP
Finally, it was time for our one year check-up. This was a lot easier than I was expecting. The doctor came in and just reviewed Ethan’s case with us.
Then, he looked at Ethan’s feet. He noted again about the flexibility and range of motion that Ethan had and said how positive that was for our case. Of course, he checked in on how often Ethan was wearing his brace and reinforced the idea that it needed to be on for nights and naps (again, at least 12 hours per day).
His doctor also reviewed his course of treatment with us. We were doing everything we were supposed to be doing and Ethan looked great. He needed to continue to wear the brace for hopefully another 2-3 years (or as long as he can’t take them off himself). The doctor emphasized the importance of this because without his brace, his feet could start to turn back in.
We ended on a very positive note, prepared to follow doctor’s orders and come back for our next visit in another year.
LAst Thoughts about our First Year
The many times we have met with our doctor over the past year, he mentioned how the brace part is the hardest part. Making sure that brace stays on consistently can be hard. However, I don’t feel as though this is the hardest part for us, even though it is the most important.
I found that the casting and surgery were the hardest parts for me emotionally. Seeing full leg casts on your baby for 8 weeks was not easy. He couldn’t move his knees or his ankles for pretty much the first 2 months of his life. That had to be uncomfortable.
While wearing the brace full-time was inconvenient, I did find that it was a little easier to see. He could move his knees around and was able to start doing stuff with his legs. My family called this phase the snowboarder-in-training phase because of how his feet were positioned.
Even when I am putting on Ethan’s brace every night, I sometimes forget that he had clubfoot. He has come so far and his feet don’t show any indication of his journey.
This first year will quickly become a distant memory to you, but your child will one day want to know about their journey. Make sure this adventure is one they will cherish.
What are some of your cherished memories with your clubfoot little? I’d love to hear about them below.