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.
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If you’re reading this, you may be a clubfoot mommy. Believe me when I say, I know what an emotional roller coaster it can be. I share our story in the post From One Clubfoot Mommy to Another. Today, I’m sharing how to make a clubfoot bar cover for a Ponseti bar, but it can easily be adapted for other bars.
As you’ll discover, the bar is heavy and a little sharp. It doesn’t seem that way until you see your child brings his or her feet – and the bar – to eye level. That’s when you realize the bar needs some cushion. Also, your child will kick and scrape your legs while on your lap. It took some bruising and a cut before my husband and I decided we needed a solution.
Making a Clubfoot Bar Cover
To make a clubfoot bar cover, I found pipe insulation to be the best thing for padding. I tried several things like pool noodles, but pipe insulation was the best – hands down. You can purchase it at any hardware store like Lowes or Home Depot. In a pinch you can get it from Amazon. Link provided below.
When it comes to the velcro I tried different options. I tried self-adhesive velcro, but honestly, it would come off when I took the cover off. It also didn’t withstand washing well. Therefore, I recommend using sew-on velcro. If you aren’t comfortable using it, I recommend the following velcro:
Fabric of your choice
Measuring tape and strait edge
Rotary cutter or fabric shears
Needles if hand sewing or a sewing machine
Measure the length of your bar inside the shoes
Cut the pipe insulation to fit. Adjust as necessary.
Next, slice the side of the pipe insulation lengthwise. Place it around your bar and make sure it’s a good fit.
Taking your bar length, measure your fabric, allowing a half inch – whole inch on all sides (sides, top and bottom) to create your seam. Wrap it around the pipe insulation to make sure it fits all the way around the circumference.
Fold in the edges to create a clean seam. Secure with pins.
Iron your fabric.
You can choose to hand stitch or use a sewing machine
Sew all four edges.
Finally, sew your velcro across the top and bottom. If using the one-wrap straps, skip this step. Your velcro will wrap around the outside.
That’s it – how to make a clubfoot bar cover. It took me about 30 mins for this project, but them, I’m a beginner at sewing.
It was week 20. It’s a big milestone for any mama. You are halfway through your pregnancy and you get the first big look at that little, but growing human inside. All of my pregnancies had been marled by complications. Two ended in miscarriage. I had GD with both pregnancies. My placenta had failed with my first son, something they noticed at our 20 week anatomy scan when my amniotic fluid was fairly low. So anatomy scans are both happy and slightly terrifying for me.
So when I laid there for my second son’s anatomy scan, I tried to calm myself with positive vibes. The sonogram tech did her thing, then handed it over to the doctor. She slid the ultrasound transducer across my glistening belly. Everything seemed fine, until she got to my son’s legs. She went back and forth, pressing harder each time, staring intently at the screen. My heart sank as I sensed something was wrong. “So, baby’s foot looks like it might have a club foot.” Fear swept over me as she continued to examine his little twisted foot. “It’s hard to tell because it’s up against the placenta. So is it like that because of the position or is it a club foot? Let’s see…” She measured both little feet. “So I’m going to say that he has a clubfoot because of the width, but we’re going to keep an eye on it.”
In an instant, our happy moment vanished. The doctor went on to explain that a club foot was a congenital defect that deforms the foot into a club-like appearance and causes patients to walk on their ankles. She didn’t have to tell me. I had seen it. When I lived in Europe, I saw it frequently. Their socialized medicine leaves so many untreated. Go the Vatican and you’ll seen tons of them, lined up along the streets begging. Let’s be honest, it’s a pitiful sight – at least in this day and age when you know the treatment is available. It’s absolutely heartbreaking. So when I left the doctor’s office, that’s about all I could think about. Those poor people I had seen years before.
My OBGYN didn’t give me a ton of information. As far as pregnancy is concerned, it’s business as usual. They said I would be directed to a pediatric orthopedic surgeon after delivery. So here begins our journey. This is where I tell you that I’m not a doctor or medical professional and I’m not giving any medical advice. I’m just sharing the emotional journey we went through because I had no idea what to expect and didn’t know where to find support.
An Emergency C-Section
At week 37, I developed preeclampsia and had an emergency c-section. My blood pressure was over 200 and so they had me on Magnesium Sulfate for 24 hours after delivery. My poor little guy was just barely 4 pounds. He had stopped growing due to my placenta failing. He was rushed to NICU minutes after delivery and let me tell you that Magnesium Sulfate (or Mag as the nurses call it) is just terrible. It gives you double vision, nausea, a screaming headache and disorients you. So it nearly 48 hours before I was wheeled down to the NICU to see him. Now let me be honest, when I found out my little boy was going to have a clubfoot, I went home and googled it. I scrolled through image after image of misshapen feet, slightly horrified and totally discouraged, despite reading that it was totally curable in a first-world country. But not even all that research prepared me for what I saw. That’s because when it’s your baby – the baby you hoped and prayed for – the baby you want desperately to protect – is born with a deformity, your heart sinks. I cried. Like body shaking, sobbing into my hands, can’t catch my breath, ugly kind of cry. Nurses comforted me. They tried to remind me that it would be okay and that the Ortho nurse Daphne would be up shortly to talk to me.
This is where I knew God was working. My ears perked. You see, Daphne is a special name to us. My husband had an great-aunt Daphne who never had children. She poured out all her affection on my husband and his other siblings and cousins, earning a special place in their hearts. So when we lost our second baby due to miscarriage, we decided to name her after our two aunts who loved us deeply, but could never have children of their own. Daphne Guadalupe is the name of one of the babies I lost and here – as if it were God’s own design, a Daphne was here to help my little boy. Chills.
When she arrived, she explained she’d be taping Tristan’s leg and foot. The sooner you start training the foot to the correct position, the better success at a complete healing. So while he was in NICU, he’d under go this treatment. Everyday they’d undo it and perform a series of stretching and physical therapy. Then they’d retape his foot, carefully monitoring his skin color for circulation problems. This went on for nearly two weeks. It was still very turned, but already you could see he was responding to it.
Eventually we left the NICU and visited our new Pediatric Orthopedic Surgeon. Thankfully we were paired with someone with a beautiful bedside manner. As my husband and I sat there nervously, he began to give us a brief history of clubfoot. For centuries it was a deformity that was left untreated. Then there was a French Method which involved the taping we had done in NICU as well as a surgery that honestly, sounded horrifying. It was a very invasive reconstructive surgery that as he described it “was basically taking the foot apart and putting it back together with pins” and then casting. It sounded awful, but he suggested we start with another, less invasive method and save the French method for a last resort.
He suggested the Ponseti method which had proven very effective. The only catch was that it would require a strong commitment on our part. Our son would go through serial casting. It’s a plaster cast, like when you break a bone except that it would be changed out weekly to allow for growth and to check progress. Then he’d go through a small surgery where they cut the achilles tendon, then another cast for several weeks. Then finally special orthopedic shoes attached to a Ponseti bar that would keep his feet in the proper position. Then he hit me with a 2×4. He’ll have to stay in the boots and bar until he’s four.
He tried to comfort me by saying that he’d only be in them for naps and nighttime at that age, but immediately I thought about how I had fought my toddler to nap and how hard that had been. It ended with me giving up on naps. I couldn’t imagine fighting a toddler to wear a contraception to sleep. I left both hopeful and horrified, with our son’s leg in a plaster cast all the way up to the top of the thigh.
Living With Clubfoot
There are so many things that you don’t think about until you’re faced with it. What kind of clothes will go over a cast? How will I bathe him? I was surprised to learn that he could wear most regular clothes with the cast and I found that Glad Press & Seal was a life saver when it came to keeping the cast dry during baths. One day Tristan had a terrible bout of gas. That’s when I learned he couldn’t kick his little legs when he had gas pains. He became even more inconsolable. It broke my heart. By the way, blowouts still happen to babies in a cast and let me tell you, it isn’t fun trying to get the poop off a plaster cast.
Then there are stares. Most people never asked about his leg, but it was hard not to notice them stare… or do the exact opposite. Some people would look only at his face, purposely avoiding anything below the neck. Don’t let this bother you. Most people are good people and they have no idea what they should do, so even if they are awkward and obvious, don’t let that get to you. It’s their best effort at protecting your feelings. I even had a friend buy him shoes. It was hard not to be sensitive about it. There are going to be all kinds of opportunities to be offended, but I strongly caution you against giving into that. Believe that people have good intentions and you’ll be much happier.
Every week we went to the doctor and every week we had a new cast. If you’ve never broken a bone before and worn a cast, it can be a little unnerving when they remove it. They use a special saw that has a blunt blade. The blade moves back and forth and its the vibration that cuts. The result is that it cuts through the cast but not the skin. It’s loud and still looks like a blade, so it’s a little unnerving regardless when its cutting around your infant. It’s perfectly safe, I assure you. Our doctor was very thoughtful. At his suggestion, we planned appointments around his bottle time, so he was feeding during the cast removal and new cast application and therefore didn’t shed a tear. He was too busy chowing down!
Several weeks in, they removed the weekly cast and the doctor felt confident it was time for the surgery. I admit, I was very scared, but I’m going to tell you, it’s not bad at all. They sent us out of the room and one local anesthetic and 20 minutes later, they were done. He had a new cast on already and you could see it was already bloody, something they informed me, was totally normal. Unlike the other casts, he would stay in this one for three weeks. He was a little fussy that day, but he seemed back to his normal happy self by the next day.
When I went back three weeks later and they removed the cast, I was shocked. His foot looked amazing. I couldn’t even tell there had been an incision. Our doctor said they used a delicate scalpel designed for eye surgery. It was perfect for little babies. It was time to move on to boots and bars.
So much of the success would be up to us. If we resisted the urge to take off the brace and follow instructions exactly, he’d be okay. We went to the orthopedist who fitted him. Tristan was so tiny that he’d be in the smallest shoe and he showed me how to properly put it on. The heel needs to be all the way down, the foot flat and held sturdily in place with the use of buckles and straps. This was crucial. Isolating the foot in that position is what will heal it. Fail and you risk reoccurrence. As they instructed me, I held back tears. All I saw was the heavy, clunky metal, straps and buckles. They showed me how I could easily remove the bar for diaper changes with a quick disconnect. It looked like a medieval torture device. They assured me, I’d get used to it and so would he. I wept all the way home.
The next few days were hard as we learned how to lace them and strap them. Explaining it to grandmothers is not fun. You can hear the hurt in their voices and you find yourself reassuring them that it will be okay. I quickly learned that pants would be difficult and I wasn’t going to be able to use all those cute footed sleepers that had been so handy with my first son. They find ways to untie the shoes and even kick them off when they are big enough. The metal bar scrapes things and I had to make a cover to protect him, us and our possessions from being damaged or hurt! (Ponseti bar cover tutorial coming) But this is where the sob story ends.
This is where I tell you that we are now six months into this journey and it’s amazing. The boots and bars have not held my son back. He’s found ways to roll over, to sit up, and to play. He is not bothered by it all. It’s completely normal for him and in some cases, even has a physical advantage because of it. This is where I tell you that his foot looks amazing! When he takes the shoes off, you’d never even know there was a problem. His foot looks totally normal. This is where I tell you that we don’t even think twice about it in our routine. There are plenty of other cute outfits out there and that he doesn’t even have to wear the boots and bars a good part of the day. This is where I tell you not to worry. Your baby will be fine and so will you. Parenting is hard even if your baby is well and somehow, by the grace of God, you’ll get through this and there will be far more joy than tears. Don’t waste tears over this. From one clubfoot mom to another, it’s going to be okay and it’s far harder on you than it is on them. Have your cry, but don’t stay there. Embrace it. Pull yourself up by your bootstraps (no pun intended) and show your child how to tackle life challenges.
I remember when we first met with the doctor and he told us about famous people who were born with clubfoot. Damon Wayans, Troy Aikman, Larry Sherry, Sir Walter Scott, Kristi Yamaguchi, Charles Woodson, David Lynch, Dudley Moore, Jim Mecir, Freddy Sanchez, LeRoy Butler, and even Mia Hamm just to name a few. I was shocked to learn how many of them went on to become professional athletes. It was hard to believe, but I totally get it now. Tristan has the best little attitude. His nickname from everyone is “smiley.” I can’t wait to see what he does with his little life. Something tells me it’s gonna be amazing and this was just a little road bump in an otherwise great life!