“What happened to her legs?”
“Why is your baby wearing casts?”
“Aw, poor baby. What’s wrong with her legs?”
These and other questions similar to these are ones we became very accustomed to during the first 8 weeks of Paisley Grace’s life. I fully anticipated these questions and I prepared myself accordingly. To my surprise, we actually never got annoyed with people asking questions about our daughter’s feet. In fact, we learned to embrace them. Now don’t get me wrong, the first few times it was super weird and I was a little hesitant to answer. However, as time went on we welcomed questions about our baby’s casts and loved spreading awareness and education about clubfoot!
To be completely honest, when we first found out that Paisley was going to be born with clubfoot I was very scared about what other people would think about our daughter. I was disappointed that we wouldn’t have the “picture perfect” family because our baby would have to wear casts and special braces/shoes. I remember crying to my mom on the phone about how all anyone was ever going to see when they looked at our baby would be her casts. I was even very hesitant to tell other people that our little girl would be born with a deformity. When we first found out, I constantly just wished she didn’t even have clubfoot. Looking back, I am pretty disappointed in myself for even feeling that way. It was proud and selfish of me. I wonder if any other moms of babies with clubfoot felt that way? I guess you just always have this image that you will have this perfect baby and nothing will be wrong with them and when you find out something is wrong… it just kind of rocks your world.
I am very thankful we found out about our baby’s clubfoot well in advanced. This gave us time to research, prepare, and embrace the facts rather than wishing they weren’t true. I’m kind of embarrassed to admit this…but I did not even know what clubfoot was until the day we found out Paisley had them. Now, I’m constantly reading articles, websites, and stories about clubfoot. Through this, God has given me a passion for clubfoot education and spreading awareness! (Sidenote, sorry!) Anyway, here’s what it was like going through the casting phase of Paisley’s clubfoot journey:
- I’ll start from when Paisley was born on August 9th. I remember that even during labor I was thinking about how excited I was to see Paisley’s little feet after she was born. The moment Paisley was born and they put her right onto my chest. I remember very distinctly that after about 45 seconds I looked down at her feet and said “your feet are so beautiful!” There’s something so strange about it but maybe other moms of babies with clubfoot will understand. I instantly LOVED Paisley Grace and I instantly loved her adorable feet!!
- August 15th: Paisley was only 6 days old and we went to Shriners Hospital for Children to get her first set of casts put on. For this first casting me, my mom, Gus, Becky, and Kassidy were all able to be there. I was pretty much a nervous wreck. It was pretty early in the morning and they warned us that the first appointment could take up to 4 hours. Well, it did. But it didn’t even seem that long! The hardest part of that first casting wasn’t watching Paisley get the casts put on her legs. Instead, the hardest part for me was when they told me I could pick her up after the casts were on. I instantly broke into tears and said, “I don’t even know how to hold my baby anymore!” It was a really rough day, honestly. I thought it was going to be difficult for a long time after that, but I was wrong. Day one was rough, night one was rough, and the beginning of day 2 was rough. During those rough times we just spent extra time cuddling our baby and loving on her. We held her A LOT. Pretty much constantly just to help her feel comfortable. After about a day and a half in her casts, Paisley had already started to adjust. I think it is just difficult for any baby to get used to something completely new.
- August 22nd: Paisley got her first set of casts taken off, and the second set put on! For the second casting, me, Gus, both of my parents, Gus’ mom, and my sister were all able to be there. At this appointment, I was extremely apprehensive about the cast removal. Once they got it started – I realized I had absolutely nothing to worry about. The cast tech, Stephanie did an incredible job and Paisley didn’t even cry! The casts came off and we all just admired the progress of Paisley’s feet. It was completely unbelievable how far her feet had come in only ONE WEEK! This is something I want to encourage other moms of babies with clubfoot about: the treatment is truly incredible! There’s no other word to describe it. You will be in awe at the progress of your baby’s feet in such a short amount of time. After Paisley’s second set of casts, we all had a rough time again for about a day and a half. Then, she got used to her new set of casts and we were back in business!
- August 29th: Paisley got her second set of casts taken off and her third set of casts put on. This occurred every week, if you notice the pattern! That’s part of what makes the Ponseti method so effective. It’s serial castings every week for 5-7 weeks of slowly, gently manipulating the feet to the desired position. If you are going to be having a baby with clubfoot or if you know anyone who is looking for a clubfoot doctor – I would recommend ONLY seeing a doctor who is skilled in the Ponseti method to treat the child’s condition. Anyway…Gus and I went to this casting appointment together. Paisley did great again when they took her casts off. She did not even cry! Putting them on was another story, but would you expect anything different? It was difficult to see her screaming and crying as they manipulated her feet into the position they needed them in and as they put the casts on. At the same time, I stayed strong because I knew that it was for her own good. I kept reminding myself that as hard as it was to watch her be so upset, this treatment was going to help her and make it possible for her to run around and play someday!
- September 9th: Paisley got her third set of casts taken off and her fourth set put on! Gus and I went to this casting appointment together. This was a happy, happy day for us! The serial casting stage was supposed to take at least 5-7. However, the day she got her 4th set of casts put on we got some GREAT news! Dr. Gibson informed us that this would be Paisley Grace’s last serial cast because her feet were progressing so well. It was only number 4!!! At this appointment we were told that she would be getting surgery (a tenotomy) the following week and then right after surgery they would put one more cast on which she would have for 3 consecutive weeks. The doctor and cast team said that she has “the perfect clubfeet.” It made me so happy!
- September 16th: Paisley got her 4th set of casts taken off, had her tenotomy surgery (which is where they cut the Achilles tendon to allow it to lengthen), and then got her 5th set of casts put on! I was really anxious about this appointment because of the surgery. At Shriner’s, Dr. Gibson let us decide whether we were going to get Paisley put under general anesthesia for the surgery OR if we were going to chose to have them put EMLA cream on her heels and give her a shot of lidocaine in each heel. Every parent is different, but we , personally, decided that we did not want our baby to go under general anesthesia at a month old. Dr. Gibson said that he leaves the choice completely up to the parents. I was a little bit nervous about our decision but looking back, I’m very glad we did what we did. My friend Heidi came with us to this appointment. We were all in there as they took off her 4th set of casts. Then, we got to hold her and love on her little feet while they applied EMLA cream to her heels and then put plastic tape over it to let the cream absorb and take effect. When they were ready for the procedure, they had us leave the room. We went up to the cafeteria and had breakfast together. After the tenotomy was complete, we walked back into the room and Paisley was happily lying on the table with her new set of casts already on! She wasn’t acting any different than she normally did after castings. I was very relieved. They gave us some special instructions and let us know that after the numbing agents wore off, she would probably be uncomfortable. The next few days were full of more rough adjustments but we made it through! We used Tylenol, propped up her little casts with blankets, and gave her lots of extra cuddle time during those first couple of days. It didn’t take her long before she was used to her casts again and she was kicking those things all over the place! That’s another thing about babies with clubfeet – they do not let ANYTHING slow them down!! Paisley was still moving her little casts like crazy even though they seemed like they would be too heavy for her to move! Paisley stayed in her 5th set of casts for 3 weeks. That stretch of time was a lot easier than I thought. It’s nice because it allowed her to really get used to the casts and she didn’t have to make a new weekly adjustment like she had been doing since she was born! Out of all the casts, the 3-week long cast was the one she did the best with.
- October 7th: Paisley got her last set of casts off and moved into 23/7 boots and bar wear. This was the end of the casting stage of her clubfoot journey. We are looking forward to eventually sharing details of Paisley’s clubfoot journey as she continues in the boots and bar phase of her treatment!
Here are some more tips for clubfoot moms in the casting stage:
1) Allow your baby time to adjust the first couple of days after a new cast is applied. The doctors who treat clubfoot according to the Ponseti method use gentle massage and manipulation at each cast change to get your baby’s foot to form to the proper positioning. We learned to anticipate at least a rough day and a half to two days after each cast change. Every baby is different, but we learned that it’s helpful if you just prepare yourselves accordingly!
2) Try to not go to the casting appointments alone. It was very helpful to have other people there as a support system during the cast changes. Watching your newborn baby go through something like that pulls on your heartstrings and if you can have other people there to encourage you and support you, it helps a lot!
3) Don’t get offended when people ask about the casts. If I read that tip somewhere before I had Paisley I would probably get mad. But…hear me out! I know it’s none of their business and they really should be asking but people are curious. And I’m going to be honest, I would probably want to ask “why” if I saw a baby with casts, too! (I just wouldn’t have the guts to do it!) It’s pretty neat when you can teach someone about clubfoot who maybe has never heard of it before! Try to view each encounter with a curious onlooker as an opportunity for you to spread awareness of a condition which has greatly affected your own family!
4) Join clubfoot support pages!! I can’t say it enough. I don’t know what I would do without having the other clubfoot moms as a support system. Even through the casting phase, it was great to have a place where we all had so much in common and you knew you were not alone.
5) No footsie pajamas. Sorry, it just doesn’t work. I know they’re cute…and it’s kind of disappointing that our sweet babies can’t wear them…but just think of how exciting it will be when they can wear pants and shoes and be running around playing and dancing because they have corrected feet!! If you’re really desperate and you absolutely are NOT okay with the fact that your baby can’t wear pants or footsie pajamas then you can probably buy them a few sizes too big and slip them over the casts. It’s up to you!
6) Enjoy this stage of life with your baby. As clubfoot moms, we are literally raising a newborn with casts. It’s hard work. Newborn babies are hard enough as it is and when you add the element of casts on their legs it makes for an interesting, and sometimes difficult, situation. Just try to enjoy it as much as you can. I know that sounds kind of crazy at first. The truth is…time really does fly and you don’t want to look back on this stage of your baby’s life and realize that you just constantly wished it away.
7) Two words: BABY LEGGINGS. Paisley LIVED in baby leggings for the first 8 weeks of her life. I mean seriously. We put those leggings on her everyday! They were so helpful for several reasons. First of all, I was pretty worried at first about her getting yucky things in her cast during diaper changes. With the baby leggings, you can pull them up and over the casts so that it creates a little barrier and you don’t have to worry about “stuff” getting inside the cast and making a mess! Also, the leggings made the casts look inconspicuous! And, they’re just plain cute. We had fun with them and loved “dressing up” her casts. Between baby leggings and coband wrap, (yes, the coband wrap you can get at tractor supply) Paisley Grace always had some stylin’ looking casts!
I hope this helps someone out there. If you’re a mom of a baby with clubfoot and you have any questions about the casting stage of the clubfoot journey, please feel free to contact me! I would love to talk to you!