My Journey with Baby’s Positional Clubfoot- Part 1

My Journey with Baby’s Positional Clubfoot- Part 1

Back in December of last year I got very sick with Bronchitis and the nasty nasty flu. When I originally got sick, I didn’t think much of it other than, “Well this stinks. I have an 8 month old baby to take care of and I’ve got body aches, chills, and can barely breathe.” When I went to the doctor, before I had X-rays they asked me, “Is there any chance you could be pregnant right now?” I just looked at them like they were CRAZY! Me? Pregnant? With an 8 month old? Are you nuts!? But, I had them put the big lead vest over my belly just in case. And it was a good thing I did too! Because little did I know, I DID have a little baby in there!

Fast forward, I was eating Manwich for dinner one night and BAM! Sick as a dog. I thought to myself, uh oh. The same exact meal made me sick when I was pregnant with my first baby. I decided it was time to take an at home test. I never got on any kind of birth control because I was breastfeeding and I am one of those crazy moms who won’t take anything during pregnancy or breastfeeding. Not even for a headache. I also never received any “monthly visitor” because of the breastfeeding. So there was nothing for me to track! When the test said “Pregnant” I called the doctor.

My first ultrasound was pretty funny. It was one of the internal ultrasounds. Well…I was so far along already that the baby didn’t even fit on the screen. The doctor measured the femur bone and estimated I was already 15 weeks along. FIFTEEN WEEKS. That’s almost 4 months! I felt so silly! How did I not know? I kept having to explain myself over and over to people, and the famous comment was, “So that show ‘I didn’t know I was pregnant’ could be legit then? Maybe you should go on there.”

He doesn't even fit!
He doesn’t even fit!
Measuring his femur to estimate a date
Measuring his femur to estimate a date

Needless to say we didn’t have to wait much longer to find out the sex of the baby. In fact, on the very first ultrasound in my OB’s office, we were able to see that he was in fact a HE. But it was confirmed within a couple of weeks. The gender scan is mainly for making sure your baby is growing correctly and she took all of the pictures and we got a couple of keepsakes to take home.

At my next OB appointment she told me that I would have to go for another ultrasound. That’s never really what you want to hear. She explained that it looked as though the baby may have a clubfoot, but it was hard to see so she wanted to make sure it wasn’t just how the radiologist took the picture. For those who don’t know, clubfoot is an unusual position of the foot, usually creating the foot to take on a kidney-like shape, and while painless, it can cause problems later on in life (walking stage) if left untreated. The next week I was in again. I watched as the woman tried angle after angle to get a decent picture. Both feet and his spine. I watched him squirm away and flex his feet. To me, nothing looked wrong. But again I was told that it was possible and if so, he would see a specialist in the hospital right after he was born.

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club

I had a crazy crazy labor. Seriously. Almost had this baby on the side of the road. From my first contraction to the moment he was born was a total of one and a half hours (my first took 11 hours). My husband missed the whole thing while he parked the car. CRAZY. When they handed me my new bundle of joy I was terrified because they kept saying, “emergency labor,” I thought something was wrong. But he was absolutely perfect. Strong lungs, great color, perfect little baby. They were just saying that because that’s what happens when you come in practically crossing your legs to keep them in!

The one he isn't holding up is the one
The one he isn’t holding up is the one

The first pediatrician came in and looked at his foot the following morning. She said, “This is no clubfoot. It’s just a positional deformity from the way he grew in the womb. No surgery or casting will be done here. But follow up with your normal pediatrician.” Phew.

Fast forward to seeing the pediatrician for the first time. He agreed. It was only positional and not something he was worried about. He said with some stretching at home it would probably fix itself. So we went home and stretched and played and grew. Nothing changed. He held his foot in that curled position no matter what we did. It was still very flexible but he just wouldn’t hold it normally. I felt as though I had done something wrong during my pregnancy, I have even put partial blame on the x-rays I got even though it is silly. At our 2 month visit, the pediatrician said we should probably get him into a specialist to get a second opinion, because the foot had not changed and when he holds weight on it, the side of his foot is where the bottom should be (see picture below).

Putting some weight on it, he curls it under
Putting some weight on it, he curls it under

When we took him to the orthopod, the doctor treated it like a normal club foot. He called it a postural clubfoot however, meaning that it was just positional and wouldn’t have to be treated with surgery. But then he told us that we would have to get him an ultrasound on his back to make sure that he didn’t have spinal bifida. Um, what? This was the first I had heard of anything like this! Apparently clubfoot and spina bifida go hand in hand. No one had prepared me for that and I was a nervous wreck. I scheduled the ultrasound for as early as I could and took my baby 45 minutes away to Mott Children’s Hospital. They are so amazing there. And quick, and gentle. We got the results at the doctor appointment in the room right down the hall from the radiology department. Thankfully, he was clear. No spina bifida.

This is how he holds his foot normally
This is how he holds his foot normally
When he gets excited and kicks, this is as straight as he can extend
When he gets excited and kicks, this is as straight as he can extend

Our journey in this is just beginning. My baby is scheduled for his first cast in a few days. He will be in a full leg cast for one month, and it will be changed every week. After that he has to wear a special pair of boots that have a bar connected them for 22 out of 24 hours a day for 3 months. Then they will reassess his foot and see if further treatment is needed. He may have to wear a special boot on one leg for up to 4 years at night only. I am worried about his development, since we are just now at the rolling over and sitting and soon to be crawling stage (he will be 5 months January 14th). But as my mother in law constantly reminds me, “Kids are amazing at the way they heal and adapt. He will be back on schedule before you know it.”

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I will update you after our first round of treatment is over and done with.

Do any of you have any experience with club feet or any other gestational deformities? Let us know your stories below!

15 COMMENTS

  1. I’m a emotional wreck myself. My son has his first appointment where they will basically do a consultation about what looks to most definitely be clubfeet .one looks worse then the other but both turn inward. I’m trying to stay calm but can’t help but cry uncontrollably,hormones are making it worse!!But I really am a mess because the word spina bifida scares me to death. I also had a toothache and had X-rays at 4 months and was kind of thinking that’s what caused this. Me nor his father or any family members have clubfeet. I also had never heard of it till our baby boy was born 2 weeks ago.

    • Hi Jessica. I know how you feel and its not easy at all. My son is currently 2 weeks old and Iam still so emotional. If you ever need someome to talk to Iam here.

  2. Thank-you for sharing
    I just recently found out at 19+5 weeks found out my baby has a club foot but my ob is doing another ultrasound to confirm.
    I’m nervous & scared for my son
    Your baby is absolutely beautiful and it brings so much hope to me.

  3. Hi Lauren,
    I have 8 month old twin boys and one of them was born with positional club feet, one foot being more severe than the other. It came as quite a surprise considering I had quite a few more ultrasounds than a singleton pregnancy would have. It was never mentioned or noticed by the US Techs. I’d be happy too share with you what we’ve done from about 8 weeks old until even now to correct it. I have lots of pictures too! I added in my email to post this comment so hopefully you have access to it if you’d like to ask me anything about our experience.

    • Kristen, I see that your post was from 2 years ago and I would love to know your experince so far. My son, 2 weeks old, was born with right clubfoot. He is currently on his second cast.

  4. Hi, Lauren! My 2 1/2 year-old son was born with a left clubfoot. I found out about his clubfoot when I was 18 weeks pregnant during the ultrasound. I remember being totally caught off guard, confused, nervous, scared, overwhelmed, etc. It allowed me the time to do tons of research and learn more about the Ponseti method…I even met with the orthopedic surgeon before my son was born to discuss the treatment plan. Within the first week of being born he had his first cast applied. I believe he had a total of seven casts (including the “holding” cast after the tenotomy.)He was around 3 months old, if I remember correctly when he had that procedure done in the hospital. After that we went through the regular 23 hrs a day brace-wear and now he wears it still at naptime and nighttime. He has his foot check-up every 4-6 months at Phoenix Children’s Hospital with a Ponseti-certified doctor. We are keeping an eye on his foot–he might possibly need the ATTT procedure when he is 4-5 years old…only time will tell. I have talked via email with Dr. Morcuende in Iowa—I highly recommend him if you are ever seeking a second opinion. I hope to travel to Iowa to see him at least once, especially if my son does in fact need the ATTT procedure done.

    I see the threads on FB for babygizmo all the time and was surprised to see a post regarding clubfoot! There are some FB pages for clubfoot also–don’t know if you know about those. There’s a yahoo group as well.

    I’m sure you are doing well with it all since you are in the thick of it, but just wanted to reassure you that every little thing will be okay. 🙂

    Thanks for sharing your story.

    -Ashley Whalen

  5. My son was born with club foot I had no idea what it was and I was terrified that there was something wrong with my son. we found a great doctor in New York city. My son had casting and then got the shoes and bar. He is 3 years old and still wearing his shoes and bar to sleep. He doesn’t know any different and can’t fall asleep without them on. I think I’m more anxious for him to stop wearing them than he is.

  6. My daughter was born with unilateral congenital clubfoot. She went through 5 weeks of casting, a tenotomy, then her final cast for 3 weeks. She wore boots and bar for 4 months 23/7, and is now down to night time wear only. I will be honest, the first week of boots and bar was miserable for everyone, but it does get easier, and she now sleeps better with them on, believe it or not! We have chosen to travel to St. Louis, MO so that she can be seen by one of the (2) top clubfoot doctors in the country, Dr. Dobbs (creator of one of the 2 types of bars).

    Thank you for highlighting clubfoot, as many people do not know what it is, and awareness is a wonderful thing. I just wanted to say two things, first, surgery (aside from a tenotomy) should very very rarely be done for clubfoot. The Ponseti method (what you’ve described, with serial casting, then bracing) is the highly preferred method of treating clubfoot these days, and surgery can truly hinder things for the child in the future (mostly pain wise). I also just want to point out that sometimes clubfoot is not simply positional, but congenital (typically more severe cases, with less flexibility of the foot and requiring a bit more treatment). Even in these cases, it is most often nothing the mother did “wrong”, but just something that happened during development.

    Finally, and I’m probably being over-sensitive here, but I truly dislike the term “deformity”. I choose to use “anomaly”, simply because I don’t feel my daughter was born “deformed”.

    • Hello! Thank you for commenting, I love hearing stories. I also don’t like the term “deformity” and CRINGE when the doctors use it. In this post, I used it mainly because I didn’t have another word for it. Thank you for giving me one. We don’t call it a deformity by any means, we always just say “his foot was positioned differently.” I’m glad I’m not the only one to think that it is a harsh term, I don’t think anyone would choose to use that word for their own child. I’m very happy to hear that your daughter is doing so well! (And also thank you for letting me know the first week is hard!)

  7. Don’t worry, he’ll be fine! I found out my baby had bilateral club foot (both feet) at our 18.5 week ultrasound, which was also when we found out it was a boy. We never heard of clubfoot before this. No family history of anyone with Clubfoot. I cried of course. We did lots of research and had another ultrasound a couple weeks later because they couldn’t see the end of his spine which was important with babies who have clubfoot. The ultrasound tech still didnt see it because baby would not move but assured my husband and I that he was ok besides the clubfeet. He did not have spina bifida because his brain and heart was developed normally. *whew!*

    We prepared ourselves for the little miracle that God has given us with lots of research and had a plan. My son Ozias decided to come early at 35.5 weeks. He was in the NICU for 15 days and we went to see Dr. Yassir at the Detroit Children’s Hospital at 17days old. He got his first casts and was replaced every week. He went through 3 casts then had a tenotomy (minor surgery) which was done in the office. We were present so it was heartbreaking to see and hear him cry when it all happened. He was put on his 4th and last cast for 3 weeks straight. After that, he moved into boots and bar by 2 months old. He wore the boots and bar for 23 hours/day for 3 months then slowly went down to now 12 hours a day.

    My son Ozias will be 2 years old tomorrow! He crawled at 8.5 months, and walked on his own a week after his 1st birthday. He’s a very smart and handful toddler. If you saw him, you wouldn’t even know he was born with bilateral clubfoot. Babies adapt very well and fast so don’t worry too much! Blessed that God has trusted my husband and I to take care of this little miracle boy. 😉

    • Thank you so much for sharing your story! We are hoping we don’t have to do the surgery as well. I love the name Ozias 🙂 I will be doing an update post in a couple of weeks so keep your eye out for our progress! So glad to hear such great news!

  8. I also have a baby that was born with positional club foot!! At 18 weeks we went in for a ultra sound where all the nurse said was “excuse me while I go get the Dr…it appears the baby may have a deformity. I of course was nearing histarics thinking the worse. The Dr came in reviewed the ultra sound and finally told me she had a positional club foot. Which was quit the relief after the millions of possibilities that went through mind. I then was told I needed to schedule another more in depth ultrasound to ensure nothing else was going on. Thank goodness everything looked wonderful!! My daughter was born at exactly 40 weeks and we were referred immediately to a orthopedic surgeon. At just 10 days old she had her 1st cast. After a few months of casting we were given the shoes with the bars that she had to wear 22 out of 24 hours a day (she hated them with a passion). We went quit awhile with the boot with some improvement but when her Dr told me she may never walk and was not a good canidate for surgery I decided it was time for a 2nd opinion. We took her to a new orthopedic surgeon who looked at her foot once and said she was a great canidate for the surgery. At 9 months old she had what was less than a minute surgery, and was once again placed in a cast. After the cast was removed we were given a “boot” ….it held her foot in the correct position with out the restraint of the bar. It was a rough road mentally (though I thank god everyday it was not worse)…. Between being told she would never walk and being told by a Dr this was my fault as my womb did not grow enough (could ypu imagine being told this all while batteling PPD!!??) It was mentally draining at times. But I am proud to say she is now a happy, healthy, thriving 2 year old who runs around like crazy with her siblings. No more boot, no more casts, she is doing absolutely wonderful. Besides her left foot being smaller than her right you would never even know what she went through.

    • Wow! I cannot believe you were told it was your fault! What a horrible experience! I’m glad that she is perfect though! 🙂 Thank you so much for sharing your story! I would have gotten a second opinion as well! I hope you never have to deal with that doctor again!

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