Clubfoot Files



Our Harper was born with unilateral clubfoot.  We found out when I was 25 weeks pregnant, and it was a very scary diagnosis.  Mostly, we were afraid of the unknown.  Most of the baby books don't talk about this, and when you are new parents, things like being able to wear footed pjs  and real baths seem very important. We were scared of the doctor visits we would experience and the looks we would get from strangers, wondering why our two week old was in a full leg cast...  We worried about her ability to be a normal baby and crawl and walk and run.  We were worried about it all.

However, we discovered a wonderful thing along the way - clubfoot is something completely treatable and worlds away from some of the things other little babies have to endure.  We were lucky that her case was mild and she's such an easy-going baby anyway.  




Our treatment process has gone amazingly well.  I know this is not the case with everyone, but I do want to offer a positive perspective for other parents who might be going through that very same worry we did.  It's been SO much easier than we thought it would be.  It's an extra step in the jumble of all that is raising a baby, but it's been nothing more than a minor inconvenience and an only occasional worry.  Sure, I sobbed uncontrollably in the doctor's office when we first learned about her foot.  Big, silent tears slid down my new-mom face as my 9 day old baby's toes were covered up with that first cast.  There was a major meltdown on that first night when we had to put the brace on ourselves.  We've dealt with blisters and lingering sores and stinky feet and delayed baths.  I've been scratched by a cast and kicked with a brace.  I've cut the feet off many a pjs... But - but! - it's been OK.  Not perfect, but just fine.  Our girl is healthy and happy and the months of treatment have flown by.



Our daughter is three years old now.  Her feet are perfectly normal and we are almost to the point of stopping the brace altogether.  I'm 100% certain I will be terrified on the day our doctor gives us the all clear!  

I'm no expert, but here are some of my thoughts on all things clubfoot, and a taste of our experiences along the way.  And please - if you have ANY questions you want to ask - feel free!! ( email me at APeachtreeCityClaire @ gmail.com !)   I know I got some awesome advice along the way, and I want to pay it forward.




Links to my posts, in chronological order:


  • My first emotional post about finding out about clubfoot here
  • Trying to figure it out while still pregnant (don't worry, you can't) - here
  • The first cast - here
  • Our progress through the casting phase - here
  • [we didn't have to get a tenotomy, thank goodness]
  • Getting the brace - here
  • Making it work - a Halloween costume with the brace on - here
  • My recommendations for baby gear while in 23/7 brace wear - here
  • Getting time reduced to nights and naps in the brace (yay!) - here
  • Buying your own shoes instead of going through your doctor and our progress on 16 hour bracewear - here
  • Getting new shoes (again!) and dealing with sores on her foot.  Also getting reduced to NIGHTS ONLY! - here
  • Donating used braces to those in need - here 
  • Progress in night-only wear and my thoughts on Harper not walking yet at 16 months - here
  • Our nightly routine at 20 months, and pressure saddles (get them!) - here
  • How you can help a less-fortunate child with clubfoot - here
  • Perspective on clubfoot and how your challenge can bring comfort to others - here 



More to come as we push forward!


Some snaps of our journey:







Here's our happy, healthy baby, with a perfectly corrected foot!  We are in the nights only phase right now and it's smooth sailing on until she's about 4 years old.



Send me an email if you have questions, comments, or just want to have someone to commiserate with.  I love connecting with other clubfoot mamas (and dads!).

claire.stravelakis @ gmail.com

** We live in the Atlanta area and see the doctors at Children's Orthopedics of Atlanta (part of Children's Hospital).  We have been to the Meridian Mark location, and the Fayetteville, GA satellite office.  I'm happy to talk with you about our experiences with our doctors if you are in this area too!**


Other resources:

The BabyCenter clubfoot support message boards (very helpful!)

Yahoo group No Surgery for Clubfoot (subscribe to the email) 

MD Orthopaedics (where we bought her shoes ourselves once instead of going thru the doctor's office, and also where you can buy extras like pressure saddles)

A Facebook group called Clubfoot Shoe Exchange (I never used this site but it has been recommended to me!)

Children's Healthcare of Atlanta Clubfoot info page

Ponseti Method overview

Ponseti International homepage

Helpful clubfoot brochure (good to send to relatives to help explain it all)

A really interesting infographic on Cure.org about clubfoot worldwide 


Once you are on the other side of clubfoot treatment, like we are now:

miraclefeet

Our experience opened my eyes to, well, honestly, the existence of clubfoot at all.  It was totally not on my radar.  The thing is, babies in America are usually diagnosed and treated early.  So when it really counts, their feet are just fine!  Unfortunately, this is not the case in other countries, and even impoverished areas of our own country.  There are many organizations that help support clubfoot treatment worldwide (yay!) and the one that we have chosen to support financially and cheer on is Miraclefeet.  They are a small nonprofit out of North Carolina who partners with clinics in many countries worldwide to help provide affordable and convenient modern treatment for clubfoot.  They even recently collaborated on creating a new brace that is efficient and affordable for developing regions!

I encourage you to check them out, follow them on social media to see how they are changing lives, and support them financially if you are able.  You can mail them your old braces and they will recycle them for kids in need.  

You can donate money.  A $250 donation covers COMPLETE treatment (start to finish!) for one child.  This includes the treatment, casting, bracing, transportation to the clinic - everything.  Imagine how you could change the life of a baby living with the same condition your precious baby is experiencing.  You could change one sweet little child's life forever. 

Clubfoot treatment is often demanding, both of our time and our financial resources.  Those shoes aren't cheap! But I know that, for me, my eyes have been opened to the realities of how something as seemingly insignificant as a crooked foot can have a drastic impact on the health, safety, and future of a child.  We are insanely blessed to live in a country where insurance, local hospitals, Ponseti trained professionals all exist.  Our Harper was treated and cured.  Her feet are perfect and she can live life as any other child might.  Miraclefeet is working to make that a reality across the world. 

- You can read more of my older posts on Miraclefeet here and here. - 

Consider giving another child the same gift you are giving your own.

8 comments:

  1. Thank you so much for chronicling Harper's clubfoot journey. As an expectant mom waiting for our little clubfoot baby (due Sept) it's been a real comfort to see the day-to-day struggles and successes.

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    1. Thanks Angela!! I'm glad it's been helpful to read! Congrats on your baby! :)

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  2. I'm so glad I came across your blog about Harper's clubfoot journey. Our son Liam was born June 11th with a unilateral club foot (his right one). It was not found on ultrasound so we were not prepared and didn't know what to expect. He is our 4th child, so as you can imagine we live a busy life! Your blog has reassured us that everything will work out fine. Liam got his first cast on at 6 days old and I cried. Luckily he only needed 4 cast and the doctor does not think he needs the heel cord surgery. Liam was fitted with the dennis browne bar and markell shoes last week. For 5 days he was miserable and kicked them off every 20 minutes. After reading your blog and some other things about the mitchell shoes we went back to the doctor and insisted on the mitchell shoes with the ponseti bar. They have made a world of difference! Our happy smiley baby has returned!

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    1. Hi Cassie! Thank you so very much for taking the time to comment and for your kind words! It sounds like you have had a very similar experience to ours (except for the shoes issue - glad you got it resolved!). I write these posts so that they can serve as a positive source of information - glad it helped you out!

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  3. Hello, thank you to tell us your story. I'm 30 weeks and my baby has got a right club foot. Can I ask you which stroller do you use? The bar is a problem with the stroller?
    Thank you and I'm sorry for my english, I' italian.
    Manuela

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    1. Hi! Thanks for your comment and congratulations on your new baby! We used a Snap and Go stroller that went with our carseat (the carseat just snaps into the base of the stroller so you never have to remove the baby from the carseat and the stroller is basically just a frame). From what I've hear, some regular strollers have a piece that goes between the legs, which would be difficult while you are wearing the brace, unless you had a easy snap-off bar like how we have. In that case, you could just pop the bar off, put your baby in the stroller, then pop it back on. However, not all bars have this easy snap off option. Some screw on. So my suggestion would be to avoid strollers that have a piece between the legs altogether!

      We had the Snap and Go base for the newborn stage, a simple Lamaze umbrella stroller now that she's older, and a Bob jogging stroller for runs. This set up has always worked well for us!

      Good luck!

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    2. Thank you so much!
      I hope everything will be fine.
      If I can I'd like to write in the future, maybe means facebook or other to have more advice...
      Manuela

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  4. Hey! Your story and the pics of the kids are heart warming. Thank you for sharing! Does Harper have unevenly sized feet now as she grows up (like me)? I'm working on a marketplace for mismatched shoes. Join us if Harper needs uneven shoes too! www.solemates.io xxx

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Your comments make me happy!

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