Club foot, or congenital talipes equinovarus (CETV) is a congenital deformity which affects the feet of newborns. The club foot of a newborn appears as if it has been rotated to a certain degree, depending on the severity of the deformity. Club foot can affect one foot or both feet-when both feet are affected, this is called bilateral club foot.
I was born with severe bilateral club foot. My personal case was the worst that the resident orthopedic specialists had seen, so severe that the option of having both my feet amputated was discussed. However, my parents chose to give me the opportunity to at least attempt to walk, and I am grateful that they gave me that chance.
Since my teen years, I have read many guides to club foot, all directed at parents. These guides are usually all about doctors, insurance, therapies, dealing with children who fuss about casts or braces. While they offer good advice to a parent who will be dealing with club foot in their child, I feel like many of them are missing a key viewpoint: that of the child themselves.
This guide will give parents a look into the mind of their child who has club foot. When you know how your child is feeling, it will help both of you understand living with club foot.
We can do more than you think we can.
By the time I was 10 months old, I was being put into double casts on a regular basis. My orthopedic team told my parents that there was no point in using walkable casts because I was unlikely to learn to walk at a normal age. But casts are no match for our natural determination to walk. Soon I was hoisting my little body up, casts and all, and stumbling around the house. It wasn’t long before I was pounding my way up and down the hallways, sounding more like a little buffalo than a little girl with the heavy thumps of my casts. Within a few weeks the physicians got the idea and started fitting me with walking casts, and although I walked a little strangely, I was walking (and running and skipping and jumping) just like any normal little girl.
It’s only natural for parents to feel overprotective of a child with club foot. Even minor cases of club foot are bound to cause worry about normal development and possible limitations regarding sports and walking. But trust me-we can do so much more than you think we can. For every pang of doubt you have about letting us go hiking with a Girl Scout troop, for every nervous thought about letting us try out for the baseball team, for every time the doctor clucks his teeth and says we probably won’t ever be able to jump rope… we’re going to prove you wrong ten times over. We are more resilient than you think we are, and we want to prove that we can do (almost) everything a normal child can do.
But sometimes we can’t do everything.
When I was about five years old, I walked up to my parents holding a dance studio pamphlet I got from a friend and said: “I want to go to ballet class.” Any parent of a child with club foot will probably understand their hesitant reaction to my request. Could I do it? Would it hurt my feet? What would the doctor say? My parents, I later learned, called up my top orthopedic physician and he promptly told them that if I didn’t at least try, they’d never know if I could do it. A respectful opinion, from my point of view.
Within a few weeks I had been signed up for a kiddy ballet class at a studio tucked away off a main road. We mainly did stretches, simple posing and a few easy dances. It only took one class for my parents to realize that ballet was simply too much for my feet. I would come home from the hour-long class literally unable to walk for several days. But I persisted in going: I wanted to be a ballerina and go to class like all the other girls. I knew it hurt, but I was used to foot pain. Unfortunately, ballet was more than just pain-it was compromising our progress with my bilateral club foot. After about ten classes, the concerned ballet instructor called my parents and requested that I be removed from the class. They agreed, and I was pulled out. I remember being absolutely devastated. To this day, I sometimes feel a little sting of regret that I was never able to actually dance.
I am a fervent supporter of the idea that children with club foot can do just about anything. But there comes a time when even our determination to do what “normal” kids can do is not enough to overcome our physical disabilities. Unfortunately, this will likely be the case at some point for your child. They will want to do something, and they just physically cannot do it. It’s not fair, but that’s the way it is. I believe it’s important to help your child recognize that their limitations don’t have to be the end of their interest in something. I couldn’t dance ballet, but I could still watch It or read about it. I would eventually make the softball team and even excel at volleyball. I could do lots of things, even if I couldn’t take ballet classes. If your child is faced with something they just can’t do, give them options. For example, if your son can’t play baseball, encourage his interest in the sport in other ways-cards, following teams on television, or even encourage an interest in sports or hobbies he can play.
We want to know what’s going on.
As a child, I didn’t really understand much about my disability other than “my feet looked twisty when I was born” and that I walked a little funny. Unfortunately, knowledge about club foot is not particularly widespread and your child may have to get used to prattling out a quick explanation to concerned teachers or parents. This gets understandably annoying to even the most patient child. It’s not very fun to explain year after year that yes, you know you are limping; yes, you are fine; no, no one tripped you, etc. I remember being questioned a few times by teachers about my home situation-imagine having to tell your parents that a teacher thought you were being beaten on the legs. It’s not very pleasant.
For this reason, I highly recommend explaining to your children the basics about club foot and their own disability. Let your child know what club foot is and how it will affect them as they grow older. I am a huge supporter of being honest about your child’s condition as much as you can. While I was growing up, I remember a lot of skirting around the issue of what exactly castings and surgeries were going to fix in my feet. I imagined that after my surgeries, I would be just like everyone else! No more pain, no more limping, and I could (finally!) take ballet classes. I didn’t realize that all the casts and braces and therapies and surgeries were just to make sure I could walk at all. It was a shock when I got older and realized that… this was it. I was always going to limp, it was always going to hurt when I walked, and I was stuck with my feet.
Please, parents: Be honest with your children. You don’t have to scare them with horror stories about severe cases of club foot, but just make sure they know that their disability is something they will be managing for the rest of their life. Pointing out examples of successful adults who have club foot is a way to remind them that they can still be who they want to be, regardless of their disability.
If we say we need to sit down, we mean it!
Depending on the severity of your child’s club foot, they may experience mild to severe pain every day just by walking around. Many of us will never know what it feels like to walk without feeling some sort of pain. As a result, though, we build up a surprisingly high pain tolerance for everyday foot pain. If you are out walking somewhere with your child and they ask to take a break because their feet hurt? Take a break! A child with club foot, who already has a higher pain tolerance, means business if they say their feet are hurting them. This principle should be taught to all adults who may be supervising a child with club foot. I can’t count the number of times I was shrugged off by parent chaperones on field trips who dismissed my request as the whine of a tired child. Conversely, when the chaperones were told about my club foot, they took my request of a break more seriously because they understood that it meant my pain was extreme.
Conclusion
I hope that, as a parent of a child with club foot, you will gain knowledge about your child’s condition from their own eyes from my personal experience. While club foot may slow us down in some areas, we are capable of doing almost anything-as long as we have a great family support system behind us all the way!