Today is World Clubfoot Day. For most, it’s just another day, because let’s face it, there is a ‘day’ for everything and who can keep track of all of them? But for me, it is a day of significance. A day that I reflect on my journey as a mom of a son born with bilateral clubfeet, and a day that I can now look back on my journey and reflect on the good, bad, and ugly, and ultimately be thankful for the journey that I never expected to have. Many of you have been following our blog and social media pages for a while, and have probably seen multiple pictures and videos of my son, Miles, and until now, you probably had no idea he was born anything less than ‘normal’. He’s the most active, can’t-stand-to-sit-still kid you’ve ever seen. Him being born with clubfeet is not something that I talk about often, mainly because I try to have the outlook that he is just like any other kid and his birth deformity does not in any way define him or me. But, today, I wanted to take the opportunity to talk about our journey. Let me preface this with I KNOW how truly blessed we are and parents deal with much, much worse. But, there were definitely struggles, from the moment we found out in our 20-week ultrasound and throughout his first year of life. A time that is already hard enough on a mama, there were moments throughout his infancy that I was pushed beyond what I thought my heart and mind could even handle. But, we made it through, together. And, our story is one that bonds us together, as mother and son, for life.
So, let’s start from the beginning.
I’m 20 weeks pregnant with my second child (I have a 2 year old daughter already), and headed to my 20 week ultrasound with my husband. In my first pregnancy, I did not have any complications or concerns, so my husband and I had no worries going into the ultrasound. We, of course, were just excited about finding out the gender of the baby and already talking about names on the car ride there. We were convinced it was another girl. During the ultrasound, we quickly learned this baby I’d been carrying for five months was a boy and we were shocked and ecstatic! What in the world was I going to do with a little boy, but how blessed I felt to have one of each and a brother for my daughter! We were thrilled. As the technician continued the scan and taking all the measurements, and checking all the tiny body parts, I do remember her taking a while to find his little feet, but we honestly did not think anything of it. After the scan was over, my husband had to rush back to work, and I told him to go ahead and not to worry, as he wasn’t going to miss anything from meeting with the doctor. I head into an exam room and wait on the paper lined table with my phone in my hand, texting all my family and friends that we were having a BOY! I did not have a thought in my mind that something concerning was found on the ultrasound. When the doctor came in, I could see in her face there was something more to be said. Expecting to celebrate that we found out he was a boy, her face said she had more information, and I knew right then to brace myself. She calmly explained to me that was she confident that our son had clubfeet. I was shocked and confused, almost like tunnel vision, but your mind is spinning. I knew nothing about clubfeet or even what that meant. This is not something that runs in my family and I did not know anyone that had had a clubfoot child, so I all I heard and understood was something is wrong with your child, his feet will be deformed, turned inward and would need surgery or some type of intervention to fix it. That was really all I could process. And, no matter what she had said (there’s a spot on his heart, he has a cleft lip, something isn’t measuring right), you never want to hear that your unborn child is anything but perfect.
I somehow held it together in that room, not really understanding what was happening or where we were going to go from here. I left the appointment, rushed to my car, then called my husband sobbing. He immediately came home from work and I will never forget us sitting on the couch, and him googling clubfeet, and then reading off a list of professional athletes that were born with clubfeet. That immediately allowed me to calm down and know that my baby was going to be okay and could even be better than okay. It was a beautiful moment of a couple realizing that although we didn’t know what the hell we were doing or what to expect, this baby boy was going to be okay. However, we were also learning that this deformity, clubfeet, can also be a characteristic of many other disorders and syndromes. So the truth was, we were terrified at the thought that this could be a sign of something worse for our son. And, on top of that, the texts kept coming through from our loved ones who knew we had our ultrasound that day and excitedly wanting to know the sex of the baby. Do we answer and say he is a boy, BUT…… Do we wait to answer until we have been able to process the diagnosis ourselves…? Ultimately, we did answer and share the news, both the sex and his clubfeet. I tend to be a transparent person, so that was what my gut told me to do. But, what was supposed to be a day full of joy that we were having a BOY ended up being a day of explaining a diagnosis to all my friends and family that I did not yet even understand.
I was referred to a high risk ultrasound office which took about two weeks to get into, so I then, of course, obsessed with the other disorders my son could have until that appointment. They did a very thorough scan of all his body parts and took a ton of measurements ultimately ruling out, to the best of their ability, anything else wrong with him. They did confirm that he had bilateral clubfeet (meaning in both feet), but that the clubfeet were isolated and not related to any other issues. This was the best news I could hear at this point. I spent the rest of my pregnancy not only in acceptance about his diagnosis, but at peace with it. This was just part of Miles’ story. Yes, the name Miles came just days after our diagnosis, it was like I just knew who he was already. I also spent the remainder of my pregnancy completely immersing myself in anything and everything I could get my hands on when it came to clubfoot. Researching hours on the computer, searching for the best Orthopedic doctor, and scrolling Clubfoot Connection (a Facebook Group for clubfoot parents which I will be eternally grateful for), and making sure I knew everything there was to know about what our journey would like look with Miles. I was prepared, knowledgeable, and ready to tackle anything thrown our way.
Miles Joseph was born on September 8, 2016, and was a perfectly healthy 9 lb 1 oz baby boy. The first thing I said to the nurses when he was born was, “Is he okay?” And, yes all moms say this, but there were a lot of underlying worries behind that seemingly simple question. I was still so scared until the moment that I held him that his clubfeet were related to some other syndrome. But, he was absolutely perfect. Yes, his feet were crooked, but I expected that. When he came out, I didn’t even see his feet, I only saw him. And it was instant, head over heels love the moment we locked eyes. He was my perfect little boy and the entire hospital stay I couldn’t keep my kisses off those sweet, crooked little feet. Truly, I thought they were the most perfect thing I had ever seen and he was made exactly how he was meant to be. It’s crazy, a mother’s love, because to me…he was 100% perfection.
The first 2 weeks home with Miles were amazing….. then came the hardest journey of my life……..
At just 2 weeks old, we headed to the Orthopedic Surgeon’s office for the first time. I already knew what to expect because I did a consult with her while I was still pregnant and had been studying at great lengths the process for fixing clubfeet. But, thinking you know what to expect and actually going through it are two very different things. I remember it being the night before the appointment and knowing that he would be casted the next day. I took this picture (to the right) while he was in his Boppy lounger, and sobbing wanting remember his feet just as they were and just knowing in my gut that things were about to change. As odd as it sounds, I didn’t want to go and get them fixed. I loved those imperfect feet. They curved right where the arch of his foot would have been and at an unnatural upward position, but all I saw was perfection. I wanted to wait longer. Yes, I understood that he couldn’t walk with his feet like this, but I still didn’t want to start the whole process of correcting them. I just knew things were about to get hard. Well, unfortunately, I was right to be worried, everything changed after that day. At the first appointment, my 2 week old infant, was put into full leg plaster casts. He would get new casts each week moving his feet and stretching those tight tendons further each time into a more “normal” position. This first casting, along with all those that followed, I stood next to my infant son and watched him cry and cry and cry. I felt so helpless as a mother, when your only instinct is to get them to stop crying and stop the pain, but I could do nothing.
The first casting appointment was the start to my sleepy, sweet, little infant becoming this uncomfortable, colic, crying mess for the next 5 months. And so in turn, his mother, also became a crying mess for 5 months. Each appointment, he would scream and cry the whole time they would cast him, and I would helplessly try to console him without any success. I remember being embarrassed that I couldn’t keep it together and my tears would just keep falling during those appointments. I was utterly sleep deprived and hormonal as hell, and this on top of it? It was hard. I attended these appointments alone as my husband couldn’t get off work, and I will never forget the kindest casting tech, that would see me struggling and would hold him for a few minutes for me, so that I didn’t have to be the only one holding the crying baby all the time. At home, I spent hours walking in circles, holding Miles while he cried, and I cried right along with him. My husband simply did not know how to help. Miles cried every evening, all evening when he got home from work, and not many people can handle that. I would try to give him to my husband so that I could take a shower, and I would hear Miles screaming the whole time and would have to rush those 10 minutes so that I could take over again. I did the best I could, but if I am being honest, I didn’t handle it all that well. I had many rage-filled moments of yelling at my husband and then running away in tears to my closet to cry. I cried a lot. I struggled keeping it together a lot. I yelled a lot. And, oh my sweet 2 year old daughter… I cried for her more than I cried for Miles or myself. I was so incredibly consumed with Miles, his feet, consoling him, nursing him, that I cried daily over the guilt of not being able to give my sweet little girl the attention she so deserved. She spent hours on the iPad at a time and I pawned her off weekly to others so I could go to doctor’s appointment, and I will always, always have guilt over that.
For 4 weeks, we went every week to the doctor to change out his casts. During those 4 weeks, we struggled, but we survived. He nursed a lot and I found positions that worked. We ultimately determined he was colic and always crying because he couldn’t move his legs. Babies love to kick their legs and that’s also how they get their little digestive systems to work. He struggled passing gas and pooping which caused him pain. By the 4th week, his feet were in a straight enough position, to move onto the next step – the tenotomy – a quick surgical procedure (done with local anesthesia) where the Achilles tendon is clipped. He was then casted again, feet in an upward position and would stay in that set of casts for 3 weeks as the tendon reattached in the correct position. Having an infant in casts was an interesting time – we couldn’t bathe him, if he got poop on them… well I had to wipe them the best I could and dry them with a hair dryer, I couldn’t wear him in a sling, he couldn’t wear footed pajamas, he was heavy, and he was hot in those casts. I had a lot of jealousy for my friend’s that had ‘normal’ babies. I tried so hard to not think that way, but those negative thoughts seeped in more often than I would like to admit.
After that last cast was taken off, we moved on to bracing. He was to wear the braces (shown in the picture below) for 3 months full time (23 hours a day, with 1 hour of free time). I had been so looking forward to the braces and convinced myself that everything would be better when we were done with casts, but that did not turn out to be the case. The braces are heavy, too, and confining, and something I hadn’t even considered was how sensitive his feet would be. His feet had been in casts and not touched for 7 weeks, and then, multiple times a day, I had to take off his braces and stretch his feet. He would scream and cry in pain. I would sing “Lean on Me” to him through tears as I caused him pain multiple times day. I still cry when I hear that song. Over the next 3 months, he continued to be colic and was never content for more than a few minutes at a time. He was miserable in the braces. He wanted to move and roll over and couldn’t. He had to be held all the time and hated most positions because they were uncomfortable to him. He screamed in the car, he screamed during Christmas present opening, he screamed while I tried to watch my daughter trick or treat, he screamed during Thanksgiving dinner…. I spent 5 months holding a screaming baby. I swear to this day, when I hear a crying baby, I have PTSD moments where I want to run away and cry in the closet.
At 5.5 months old, we were able to move down to part time wear in his braces. Meaning his feet could be free all day, and he would wear his braces at night (12 hrs a day) until he is 4 years old. Yes, you heard me, 4 years old. He still wears them to this day. And, now this is where the story turns positive. Miles is now 2.5 years old and the most active, full of energy, loving, funny, FULL of life little boy. He RUNS every where he goes. He plays soccer and climbs play sets, and loves Gymnastics and swimming. He does not remember any of the story I relived above. He happily helps me put his “night night shoes” on every single night. We go to the Orthopedic doctor every 3-4 months and, so far, have had a perfect report each time. When I look back and reflect on my journey, I am not sure I handled it as well as I could have, I vividly remember the tears, the attention that my daughter did not receive, the rage my husband felt, and think maybe I could have done better. But, then I look at my son and his perfect little toes and feet, and know that I did the best that I could and we survived and we are all still here and together. And, people have been through worse things in life….. if I had to do it all over again, I would do it 100 times to have my Miles. If I had to choose a birth defect, it would be clubfeet because they can be corrected . And, I will take the burden of remembering the pain of that time, so that he will never have to. He will never even know that he is anything but perfection.
So, on this day, and this day only, I will relive those 5 months that changed my life….. for the better. It made me stronger, a better mother, and gave me a connection with my son that is beyond anything I could ever try to describe. I learned that mothers are warriors and survivors, and that children are incredibly resilient. I learned that what they say is true – the days are long, but the years are short. Those 5.5 months were the longest 5 months of my life, but they were only 5 months of my whole life. I was chosen to be his mom and to be a clubfoot mom and to have this journey. And, I am not alone. Clubfoot is one of the most common congenital deformities affecting about 1-2 in every 750 children worldwide. And, I am so lucky, y’all. 80% of these children are born in developing countries and do not have access to the medical care that Miles did. Some of these children are not able to be treated as babies or have their feet corrected properly or at all.
So, yes, was our journey hard and filled with things that made an already difficult stage even more difficult…yes. But if you ask me if I’d change a thing, my answer will always be no. Miles is perfect, our journey was exactly what it was meant to be, and he’s just the best little boy on the planet.
I hope by sharing this, mamas out there struggling can realize there is and always will be a light at the end of the tunnel. Without rain, there would never be the most beautiful rainbows. Mama, if you’re in a tough stage right now, it will pass. Your rainbow is just on the horizon.