Our Journey With Clubfoot

Clubfoot refers to a condition in which a newborn's foot or feet appear to be rotated internally at the ankle. The foot points down and inwards, and the soles of the feet face each other. It is known as talipes equinovarus (TEV) or congenital talipes equinovarus (CTEV) . The severity of clubfoot can vary and can affect one or both feet.

August 13, 2015

My husband told me that something was wrong with the baby. I was in recovery after having a very horrible experience with IV's and catheters all morning and a know-it-all nurse fresh out of school. I just wanted to get up and go home. But having just had a cesarean I couldn't even move my toes let alone stand up and leave. This news scared me though. I heard him cry, I saw him, he looked healthy. What could possibly be wrong? My husband said it was his foot, it was bent funny and the doctors wanted to look closer at it and they would let us know.

The verdict came back that, yes indeed, it was clubfoot. I had never even heard of this before. Why did this happen? What did I do wrong? I knew I shouldn't have been on my feet that much, the doctor warned me that I needed to be on light duties but my job wouldn't allow it. I did too much, this was my fault. I went into denial and didn't even do any research. I went to Ryan's first appointment after we were released and our doctor told me we were already booked to see a specialist but we would have to drive 3 hours there and 3 hours back every week for the next 2 months. The cost for fuel alone would break us not to mention food expenses, parking, having to find babysitters for the other two, needing to ask for time off work, etc. Most of the first few months I don't even remember due to the fact that I was purely exhausted and the long days for these city trips were not helping me rest at all. I was stressed beyond what I could even imagine, not that I saw that at the time.

We were referred to Dr. Allen in Saskatoon, Saskatchewan and she is amazing! Her and her team took such great care of all of us, not just Ryan. They worked with us to get us booked for noon instead of 9 am like they normally do, they gave me a room to nurse him in so I didn't have to sit in the bathroom (been there, done that, truck stop bathrooms are the worst!), they even answered the questions we didn't know to ask. Dr. Allen was so reassuring that everything was going to be just fine that I felt okay to just let her take the wheel.

Our second appointment was scheduled and Ryan was given his first cast. He had a left clubfoot so he only needed one cast. I was still in shock about the whole situation, I think, because I remember thinking I was the worst mom for not even crying while my baby was laying there on the table being pinned down by two nurses while the third plastered a cast on his leg and he screamed and screamed and screamed. Every week after that for 2 months we went through the same thing. I would take the cast off at home the night before and we would have such amazing cuddles all night. It was difficult to nurse with him having a cast on his leg and cuddles just weren't the same.

The next picture was taken of our first cast day. He slept almost all the way home. The other is just before I was about to attempt removing his cast for the first time. And I had so much confidence in myself that I could pull that off and have him ready for cuddles with his daddy when he got home from work. It proved to be much more difficult than I had originally thought haha. I was told to soak it in a tub and when it got saturated enough it would be easy to unravel. Babies are slippery when wet. I knew this already. He was still only about 6 pounds at this point. I found it extremely difficult to hold him in the water, keep the water warm enough that he was comfortable and not screaming because he hated baths (he was also only a few weeks old). I managed...barely. It was a pretty tough experience and I'm sure glad no one was around to witness it :D

Clubfoot develops when the tendons, which connect the child's leg muscles to the foot bones, are unusually short or tight.
The cause of clubfoot is still unknown but there is a link with low amniotic fluid. Some doctors think the condition may begin as early as 10-12 weeks gestation.
Risk factors may include: oligohydramnios ( a condition in pregnancy characterized by a decreased amount of amniotic fluid), neuromuscular disorders such as spina bifida and cerebral palsy, genetic syndromes (like Edwards Syndrome), and a family history of clubfoot.

They like to have the casts go for the first 2 months but we didn't get the early start that is always hoped for. Nothing was spotted on the ultrasounds (it can usually be seen as early as 20 weeks gestation) and so I wasn't even feeling very recovered by the time we did our first big trip with him. I think he was about 3 or 4 weeks old. We missed the first 2 castings already. They did one extra one and he also had the Achilles tenotomy), just a minor little surgery to help lengthen the Achilles tendon.

The casting process was finished, thank goodness! He was starting to sleep better and was pretty used to having the big heavy cast on his tiny little leg. A couple things I didn't think of and had to learn along the way were those that we took for granted with our other babies. Changing him was something to get used to because you couldn't just grab his ankles like you would any other baby. His leg wouldn't bend so getting him dressed was a challenge sometimes. He lived in sleepers, mostly the snap ones because the zippered ones were harder since his knee wasn't bendable. And of course his leg was just so darn heavy and he couldn't move it.

The next adventure for us was the boots and bar. This starts immediately after the last cast is removed and the bar is worn 23 hours a day. It should not be worn in the car seat because it's too dangerous and can cause harm if you're in an accident. There are wonderful people who make amazing bar covers that are an excellent investment (that I didn't know about until much later!). Check out the Clubfoot Store here .

They are based in Vancouver and they also have a Facebook page as well!

These were dangerous to all of us haha! I can't count the number of times that we got hit in the forehead or the nose or the chin while playing with Ryan. He always had bruises on his forehead as well and sometimes these bruises began as pretty big lumps. The bars chewed up the crib as well and scratched up our floor in some spots. His crawling was delayed, his walking was delayed, his big boy bed was delayed...but there's no stopping this boy now! (We also had trouble finding proper sleepers for him because he couldn't use any with the feet in them) One day he just got tired of waiting in his room for someone to come get him and he got out of bed. He fell of course because of the laminate flooring, it was too slippery with his bar on. He learned to crawl with it that day. He also learned that if he was careful he could hold on to the furniture really tight and swing his feet so he was kind of cruising along. Nothing really held him back for long.

(The following picture is of his first set of Markell boots with a Dobbs bar. He was just over 2 months at this time. We later switched to the Mitchell boot due to horrible blisters on the tops of his feet but it wasn't the boot that was the culprit and this is very common although extremely uncomfortable and painful among clubfoot babies.)

The rate of relapse with the Ponsetti method is as high as 40% but this, of course, has many deciding factors from how soon the procedure has been started, how accurately the instructions were followed while wearing the bar, how long the bar was used, etc. Doctors also have differing opinions on how long the bar should be used for. Some say 2-3 years is sufficient and others believe the full 3-5 years is better. The biggest problem according to parents is that once the child is between 2 and 3 years of age it is increasingly harder to enforce the use of the bar through the night. The child is uncomfortable and it's hard for them to sleep.

In our experience, Ryan was constantly removing his sometime through the night so we started putting socks over top the boot so it was harder for him to figure out how to get them off. It didn't take him long though and even that wasn't holding him back. We couldn't get him to wear his bar any longer and it was about 2 months shy of his third birthday when we gave in and decided not to continue. I worry that he will relapse but I also know that in the entire time of him having his bar there was only a couple of times when we didn't follow protocol and so we just need to have faith it will all turn out.

Our visits to Saskatoon slowed over the months and finally we hit the year mark. He was down to wearing his bar only at night and naps (12 hours a day) which was so much nicer than only having an hour without it on. And finally we reached the next milestone. We graduated to BNB FREE in March of 2019! I cried so much! I was so proud of this guy for making it almost 4 years with them. And just look at that smile!!

What will happen in the event there is a relapse?

Talipes is never ‘cured’, rather the position and function of the feet are maximised by the treatment. Sometimes, clubfoot can reoccur. This is known as a relapse and it is estimated to occur in 1 or 2 out of every 10 cases. Relapses are more likely if the Ponseti method is not followed exactly. If a relapse occurs it may be necessary for some of the treatment stages to be repeated. Their foot may have to be manipulated into place again and casted. In some cases surgery may be required.

For now we are feeling blessed that things have worked out and though I'll always be on the look out for the foot to be relapsing, I am quite confident that we won't have one. Maybe it's just more hopeful thinking.

Thank you for taking the time to read about my family's little journey with clubfoot! If you or someone you know has also been blessed with a clubfoot cutie, I'd be so happy to hear from you! I'd love to hear your story or even just have you say hello!