We hit the two year mark in Tristan’s clubfoot journey in April. Today, I’m sharing all about our clubfoot journey and where we go from here.
I am so late writing this post. I originally, intended to write this back in April when we hit our two-year mark with Tristan’s birthday, but we had so much going on with COVID quarantine that it totally got away from me.
What Is Clubfoot
For those joining me for the first time, we discovered my youngest son was going to have a clubfoot when I was twenty weeks pregnant at our pre-natal anatomy sonogram. I was devastated to learn my son would have a physical deformity. As parents, we want to protect our children from hardships. Clubfoot is actually a fairly common deformity, affecting one in every 1,000 live births. Children with clubfoot are otherwise normal, but the deformity requires immediate intervention. Clubfoot is treatable but requires several years to heal.
Clubfoot doesn’t cause pain but if left untreated, patients will eventually walk on the sides of their feet or ankles. It is important to note that several famous athletes were born with clubfoot and went on to have successful sports careers. Troy Aikman, Mia Hamm, Kristi Yamaguchi, and Charles Woodson are some athletes that recovered from congenital clubfoot.
You can read all about our Clubfoot Journey in my prior posts From One Clubfoot Mommy to Another and How to Make a Clubfoot Bar Cover. But if you don’t want to read those posts, I’ll bring you up to speed quickly. My son required physical therapy while still in the NICU which required the taping of his foot. Then after we were released from the hospital, we saw an orthopedic surgeon went through serial casting for the first couple of months. This is actually a plaster cast that he had to wear like when you break a bone. Since newborns grow so quickly, we had to have a new one every week. Then we had a small surgery on his Achilles tendon called Achilles Tenotomy.
Finally, we got into the boots and bar stage. At first, the Ponseti boots and bars meant that he had to wear them 23 hours a day. Infants are already hard for any mama to handle, but having your infant restricted in a mental contraption brings all kinds of new challenges. Those weren’t easy days. There were lots of tears in those early days and thankfully, those days feel like a distant memory. Eventually, we moved to wearing the boots and bars at night time and for naps. This definitely made our days feel a little more normal. Once we celebrated his first birthday, we went to night time only. Our little guy was a little delayed in walking compared to other children, but right on a schedule for a baby with clubfoot. He started walking a few months after his first birthday.
Tears In Vain
I still recall when I sat in the orthopedic surgeon’s office and he told me that these clunky metal boots and bars would be normal to my son. He told me the story of a young man who wore the Ponseti boots for four years and finally no longer had to wear them. “Can I still wear them to bed,” the young boy asked. “No buddy,” the doctor said, “you’re all done! You don’t have to wear them anymore.” The little boy appeared sad and said, “but I can’t sleep without them.”
But I can tell you, he is absolutely right. We are now at the halfway mark with my son. We still wear them twelve hours a day (basically at night time). I can tell you, he is totally used to them. It is his normal. He’s always ready to put them on at night and he even has found a way to walk around the crib with them. It’s hard to believe since they aren’t flush on the bottom, but it’s true. He walks around like a cowboy with them.
Where Do We Go From Here
Our two-year appointment was a success. Yes, we still have to wear them for twelve hours at night. The tough news is that we will have to do that until he turns four. The reason we have to wear then for so long is that clubfoot has a habit of regressing. In fact, it is very possible that we can get all the way through our four years of wearing the Ponseti boots and bars and T may need surgery after all. Obviously, we are praying that isn’t the case.
I get asked all the time if he has any trouble walking. Nope! Not one bit. He runs, jumps, leaps, sprints and runs just like any other two-year-old. Anyone who saw him would never think he had any problem or deformity. The other question I get asked often is will he have any lasting effect. The answer is yes, but most people won’t notice. With his foot in the corrected position, he has a little skin that wrinkles on the outside of his ankle.
Additionally, T’s foot is shaped a little differently. One of the effects of clubfoot is that it widens the foot giving it a clublike appearance. Unfortunately, all of our therapy still does not change the width of his foot. Thankfully, T’s foot is only mildly wider than his other foot. But it does mean he will have to wear wide shoes for the rest of his life. Most people would probably never even notice.
Thank you for allowing me to share some of our clubfoot journey with you. If you are a parent with a child who has been diagnosed with clubfoot let me reassure you. Clubfoot is fixable and your child will be just fine! One day, it will all be behind you.