From One Clubfoot Mommy to Another

A Sinking Feeling

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.

Healing Clubfoot

Taping

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.

Serial Casting

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!

Achilles Surgery

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!

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