Thursday, February 16, 2017

0 Club Foot Journey: Our Baby's Story

I want to share the story of Christian's club foot. I have written notes about every month so I would not forget details.  It's important for me to have his story written to show him later. I've had lots of women over the last two years find me and tell me their own child was just diagnosed in utero and they are really scared. I have loved communicating with these women mostly in the US, but some internationally (Hong Kong, the UK and Australia) and sharing our story and offering support and hopefully alleviating some of their fears as they travel a similar journey. 

When I was 20 weeks pregnant, we went in for our anatomy ultrasound. We had found out two days prior that we were having a boy so to be honest, I was just excited to see him again on the screen. I went in with not a worry in the world. I was seriously the pregnant lady that did not stress about a thing.

After the long ultrasound, the nurse left the room and came back with the doctor. Immediately I felt sick. I knew he had something to tell us and this was the furthest thing from my mind. He said they found two issues with our baby, the first being a right club foot. My heart dropped. I was not expecting any sort of "news" at all, just another simple ultrasound.

Over the next 18 weeks of my pregnancy we had many more ultrasounds each one making me more nervous than the last. Because of his club foot and also the issue they found with his kidneys, they were starting to believe his club foot was not an isolated issue and that he might have more problems that we were unable to see from the ultrasounds. We did many tests, some of them coming back with perfect results, however, we heard for the rest of my pregnancy that they did not know what condition he would really be in until he arrived. I grew accustomed to confused looks on the ultrasound technicians' faces and I can still remember feeling like I was going to throw up the night before every ultrasound. Those feelings stayed with me throughout my pregnancy with Piper as well.

I prayed a lot during my pregnancy. I prayed that he would continue to grow healthy and strong. I prayed I would be guided to the right doctor. I prayed that there were no further issues and I hoped that the doctors were just being extra cautious and that was the reason they were feeding me so much extra information and encouraging me to do additional ultrasounds.

When I was pregnant, we started researching what we wanted to do to help our baby. I was willing to travel anywhere in the country and pay whatever it cost to help him have a healthy future. This is the part that always makes me smile. At the time, I was in the Young Womens presidency (a youth group organization in our church). The president happened to be an orthopedic surgeon, however, she did not specialize in pediatrics. We spoke with her and she suggested we meet up with her friend who did specialize in pediatrics, Dr. Vincent. By this point, we were pretty sure we wanted to go the route of the Ponseti method (a casting method) from what we had researched.

When I was about 30 weeks pregnant, we had our first appointment with Dr. Vincent. I felt sick the whole way there. We were his last appointment of the day and he immediately put us right at ease and just chatted with us for over an hour. It was the biggest relief and it was the first time in 10 weeks I felt a little more at ease. He answered all our questions, explained the whats, hows and whys and mapped out a plan for the next few years. I knew he was our guy!

While I was in labor I wasn't worried at all about the delivery (with how my deliver went, I probably should've been... haha) but just what condition he was going to be in. When Christian was born, I truly felt like it was a miracle. Besides his club foot, he was in perfect shape! I really think the reason my transition into motherhood was such a cake walk was just because I was so relieved after his birth. Four months of worry and concern about the condition of my baby boy were (almost) completely gone and now it was time to get to work!

We ended up scheduling his first cast for when he was 3 days old. Studies show that if you get them casted anytime in the first 2 weeks, it doesn't make a difference in their outcome. I could not sleep the night before his first appointment because I was so worried about him being uncomfortable or in pain. Then, he ended up just chilling through the whole thing. Figures...

He continued to get re casted weekly and each time, they rotated his foot more and more. He got used to the loud saw that would cut off his casts and they never seemed to bother him. We couldn't give him baths at home for the first few months, so we took his bath supplies to his appointments and gave him a little bath in between each casting.

This photo was taken after just a few casts! I remember being so shocked how straight his foot looked!

When he was 6 weeks old, he had his achilles tenotomy procedure done with no anesthesia. Sean stayed in the room, but I could not be anywhere close by! I felt like he had already been through a lot and it was totally messing with my heart. After his procedure, they casted him for the final time and really rotated his foot the opposite direction. It looked so painful and this cast stayed on him the longest for two weeks. He had quite a lot of blood on the heel of his cast from his procedure so I got a lot of looks when we were out and about running errands. I had to explain to some people that I don't hurt my child! Finally, I just gave up on going out altogether until he moved to the brace.

When he was 8 weeks old, he was transitioned to the boots and bar brace. We did a TON of research (and thankfully Sean had a lot of wonderful professors whom he met) and we ended up going with the method discovered by Dr. Ponseti because a lot of times when children with club feet have surgery, they can get arthritis by the time they're in their teens. The Ponseti boots definitely took some getting used to but after wearing them for a while, he seemed to not notice them at all. For the first three months, he wore the boots and bar for 23.5 hours a day. For the next month, he went down to 20 hours a day. After that, 16 hours a day and so on and so on. I cannot tell you how happy it made me to cut down on the brace throughout the day. It made everything easier, diaper changes, clothes, trips in the carseat....

The casts he wore as a little little baby were kind of like having braces on your teeth, but the brace is the retainer that keeps the foot from going back. It is critical that we are consistent with the brace because if we are not, then the foot will rotate back and then we would have to do surgery which often times leads to arthritis starting as teenagers.

He now wears the brace every night for 12 hours and every morning yells on repeat, "bye bye boots" the whole time we take them off. He will wear his brace 12 hours a day until he's four years old. Things I love about the brace: It keeps him from climbing out of his crib (we have a climber on our hands, folks)! Things I could do without: Putting it on him every night. Talk about the most intense workout ever! It was nearly impossible to wrestle him at 38 weeks pregnant. When we went to Piper's anatomy scan and it showed no club feet, I was so relieved to find out I didn't have to strap on two sets of braces every night!

At nine months old, Christian started walking. At his nine month appointment, Christian was toddling down the hall and his doctor's jaw dropped, "Is that my Christian walking??" Coincidentally, a study had just been released that stated typically children with clubfeet don't walk until 15 months, on average. Christian's walking milestone meant a lot to us. It meant that lots of hard work and tons of prayers have not gone unnoticed or unanswered. I cannot even begin to say how much we love Dr. Vincent! He always calls Christian his little superstar and Christian is obsessed (understatement) with him and so are we!

We now have an extremely busy, active and FAST 2 year old. It's everything I could've ever hoped and dreamed of when I stayed awake at night pregnant and worried. Sean and I could not be more grateful.

We just had his most recent appointment and Christian is doing great! He's right on track and should be completely done with his brace when he's four years old!

I've had many people ask me questions. These are probably the most common questions I get asked! I love when people ask me questions because then I know they're getting correct information.

Q: How do babies get a club foot?
A: We don't know. There's a genetic component (that could be the case with us but Christian's doctor does not think that's likely for several reasons). Also, moms who smoke or drink while pregnant are more likely to have a baby with a clubfoot (obviously, I did neither) and also some prescriptions have caused babies to have a club foot (I took nothing besides prenatals when pregnant with Christian, so that's not our case either). It does not come from the baby not having enough room to grow. Usually the first question I get is people asking if his foot was all twisted because he was too crowded in the womb.

Q: Is his development delayed because of his casts and brace?
A: Developmentally, the casting and brace schedule works great because the brace won't be on during the day to slow them down from different milestones once they begin to crawl or walk. By the time he learned to crawl and walk, he was only wearing the brace for nights and naps. In a lot of ways, I feel like his brace has helped him make some of his muscles very strong since he kicked that thing around all day!

Q: Will he be able to play sports and be active?
A: Yes! This is actually highly encouraged for kids born with club feet! On a lot of the clubfoot groups we are apart of, some club foot adults mention that their parents were too worried to let them participate in sports so their leg (or legs) is/are weaker and they deal with pain from being inactive. Staying active will help him develop muscles to support his foot. In fact, Troy Aikman, former Dallas Cowboys quarterback and Kristi Yamaguchi, Olympic figure skating champion, were both born with club feet.

Q: Will his foot and leg look different as he grows?
A: It's possible. Christian was born with a unilateral club feet meaning it was only one of his feet. Some kids are born with bilateral club feet. A lot of times, if their case is unilateral, their calf on their club foot leg is skinnier and their foot is smaller. Christian's club foot is smaller but such a small amount that he wears the same shoe size on both feet. Some stores, including Nordstrom, will sell you shoes in two different sizes though (Nordstrom Rack will not).

I wanted to share this video because it gave Sean and me a lot of comfort when I was pregnant. You can see towards the end what happens when a club foot goes untreated and leaves people crippled for life. It's absolutely heartbreaking. I cannot tell you how blessed we feel that we were able to get such good care for our baby and that we live in a place and in a time in age where he won't have to suffer his entire life from his birth defect. We hope to one day travel to other countries with Christian and have him meet other people with club feet so he can realize as well, how blessed he is!

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