Aiden's Journey + Cure Clubfoot Information

aiden - please do NOT download or copy!

aiden - please do NOT download or copy!

You may recognize this adorable little guy in the photo from his newborn blog post last week.  This is my son, Aiden.  He was a little over two months old in this photo, and yes, you may notice something else right away in addition to how cute he is.  My son has a cast, and it's not because he has a broken leg ... he was born with a clubfoot, and we are currently in the beginning stages of treating it. When Aiden was born, we all noticed right away that his right foot was predominantly turned in and turned over, at pretty much a 90 degree angle and would make walking for him pretty much impossible and make his foot extremely painful for him as he grows older.  Sometimes, I have learned, you find out if your son or daughter has a clubfoot from an ultrasound before they were born, but we weren't one of those couples.  We made an appointment with a specialist as soon as we could, and the same day that it was confirmed that he did have a clubfoot that we couldn't remedy on our own with exercises at home, he was placed into a cast like the one you see in the photo above.  My husband and I were both extremely overwhelmed at that first appointment, I cried quite a bit as they placed him into his first cast, but from what I have now learned, that is very common too.


(Update to this post:  There is now an additional post here, written a year after our treatment began)

 

The facts on clubfeet are pretty straight-forward.  One in every 750 children born worldwide is born with a clubfoot, twice as many boys as girls.  Over 160,000 kids per year are born with it in developing countries, and 5,000 per year in the US are born with it as well.  But the best part??  It is 100% curable.

Please note, at this point, that I am not a doctor whatsoever, but wanted to explain what I have learned about this in language that I understand and hope you will too - there is a possibility, as is in any case, that some clubfoot cases do not have to do everything below, but in our case, this is what we will be doing.

The most common "cure" for a clubfoot is the Ponseti Method.  Every week for five to eight or so weeks,  kids that have a clubfoot will have a plaster cast put on that go from toes to their upper thigh, with their knee bent at a 90 degree angle to correct their foot.  If they have "bilateral" clubfeet, this means that they will have this done on both legs at the same time, and the sooner after they are born to start this procedure, the better, so that you can use the elasticity of new muscles and tendons to your favor. This photo below is our progress so far - and as you can see, the improvement he has shown in just two short weeks has been incredible! The two photos on the right were taken at the doctors office between getting new casts after one was removed and before a new one was put on.

aiden - foot progress text

From there, they may need to have a small surgery called a "tenotomy" or a "heel snip" as our doctor calls it, where the Achilles Tendon is cut on the heel in order to help the tendon regrow to the proper length, and then one more cast will be applied for two to three weeks.

After that, kids are fitted for "boots and bars", which to me looks similar to a pair of high-top buckled sandals placed at a 40 degree angle onto a bar between each foot, which are worn at first for 23 hours a day for three months, and then at naptimes and bedtime until they are four or five in order to prevent a relapse of the foot and have to go through the whole series a second or third time.

As you can imagine, it is a little (okay, a lot) challenging for both our kiddo and us in the short term, but in the long term, knowing that our kiddo will be able to walk and run and play just like all of the other kids is all that matters.  As our doctor told us, Mia Hamm, Troy Aikman, and Kristi Yamaguchi all had club feet ... and you don't see them stopping them now!

This is what I am most hopeful for, and another one of my main reasons for posting this as well.  For the months of May and June, I will be donating a portion of sales from my Etsy shop every month to Cure Clubfoot, which is a charity and a team that works in developing countries to help kids to receive the proper treatment they need.  It costs a mere $400 to help treat those kids and give them a normal life, since it is 100% curable through the Ponseti method where they receive the casts. I am excited to do this, knowing that we will be able to make a difference in other kids lives across the world.  If you feel compelled, please contribute to this charity as well - every little bit helps!

As far as Aiden's journey goes, he gets a new cast every week on Tuesdays.  He currently has cast #3 on his leg, and his progress seems to be doing remarkable, judging by the pictures above.  We are all adapting as best as we can and for the most part it doesn't seem to bother him too much by now.  The hardest day is "new cast day" on Tuesdays as they stretch his foot into a new position before applying his cast, and the process makes him pretty uncomfortable for the first 24 hours or so afterwardsand he just wants to be held - but, that just means I get to have more snuggle time with my son on those days.

When we go out in public, there are a lot of whispers and curious glances that come our way, and a few people ask questions - but for the most part people are kind and sweet, wondering what happened and asking in a loving way as I think is completely natural.  I have learned to appreciate the people that ask, as it is a way that we can educate people more about this.  Although the doctors and nurses told us to be prepared for people to be flat out mean (due to the thought of a baby in a cast = the parent did something horribly wrong), so far I have only had one person ask me rudely what did you do to your son?? in a way that made my Mama Bear protectiveness come out instantly.

We have had to make a few lifestyle changes too - he has to have sponge baths as his cast can't get wet, and also we have to be pretty careful during diaper changes ... but so far, no mishaps there yet, thank goodness!  We have to keep him inside for the most part as his cast acts as a "snowboot", so here in Florida, when it gets hot out, his leg will get itchy and sweaty and possibly swell, so we are very grateful for air conditioning!  I also used to be a "babywearing mama", and loved my Solly Baby Wrap, but now, not being able to do that has been pretty different for me on a daily basis since he still loves to be held and nuzzle into me as best as he can.  My arms however?  They are loving the daily workout they are getting now :)

We have a few more weeks of casts and then the boots and bars stage will begin ... and know that our little guy is going to be moving around, crawling and doing every other normal baby-moving tidbit before we know it! I will update here again in about a couple of weeks with Aiden's continued progress ... let's hope that he continues to improve and be such a great little mini patient, and any prayers that you want to send our way for him to continue to improve throughout his treatment would be greatly appreciated!  We are leaning on God's grace tremendously throughout all of this, and know that this is what is best for our son.  The days that he takes his first steps will be one of the best of our lives with him so far.

If you are or will be a clubfoot mama and want someone to chat with, please let me know!  The day that we learned what his treatment would be was an incredibly hard and emotional day, and all I wanted was to talk and cry with someone else who had been through it to talk me through it ... all of those feelings you're going through are totally normal, so if you want to talk with me, please do not hesitate to email me at Kristin@GraceAndSerendipity.com or leave a comment below.

(There is one more post written, a year after our treatment initially began.  See it here.)