How Clubfoot treatment can be FUN!

What? How can clubfoot treatment be fun!?
I’m writing this blog post for the expecting parents who may have recently found out that their baby will be born with clubfoot. I know how scared you feel and how worried you must be for your baby. I’ve been there. (You can read about our experience here). My daughter was born with bilateral clubfoot and we are currently in the 12-hour wear phase of our treatment. It is definitely a long, hard road at times – If I didn’t mention that aspect of the treatment I think I’d be lying. At the same time, like any situation, it is so important to find the good aspects of a difficult time.
Let me start by saying that thanks to medical advances and incredible doctors (specifically, those who have been trained in the Ponseti method) our clubfoot babies can receive excellent and extremely successful treatment. That being said, I want to encourage you by telling you some of the good things you may experience during your child’s clubfoot journey!

1. Your baby will most likely want lots of extra cuddles and snuggles after cast changes. Yes, it is difficult to see them uncomfortable and fussy, but those extra cuddles and lots of loving will mean so much to you as parents.
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2. You will have the opportunity to meet lots of other clubfoot moms, dads, and babies who have gone through what you’re going through! It is so good to know that you’re not alone and talk to other parents about the journey if you have questions or concerns. I have met several parents of babies with clubfoot and this journey would be a lot more difficult without them!

3. You can dress up the casts and make them fun! (Yes, even for boys!!) We used cute little leg warmers, coband wrap, and cute socks to dress the casts up. Before my daughter was born, I was so worried that people would stare and ask me questions about her casts. Well, they did – but instead of being embarrassed or ashamed, I would happily tell them about my daughter’s condition and use the opportunity to spread clubfoot awareness. We rarely (if ever) encountered people who were rude about my daughter wearing casts on her legs. No one thought she fell down the stairs or that I did something wrong (irrational as it sounds, those were some of my fears). People were, for the most part, genuinely curious and had very kind responses.
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4. You will be so proud of every single milestone your clubfoot baby reaches. Yes, every mom is beyond proud of their child for meeting milestones like rolling over, crawling, walking, etc!! There is just something extra special about the clubfoot baby who has overcome so much in their young life in order to make progress. Our daughter is crawling EVERYWHERE now and we are so very proud.

5. You can make up cute little songs and rhymes for the “bedtime shoes” when you get down to the 12-hour wear phase – and you WILL get there. It may seem like it is forever away at times but you’ll get there. I was very worried that our daughter would hate having her feet confined to the boots and bar at night but she doesn’t know any different! She knows it is just part of her bedtime routine and she does wonderful with them!

6. Your clubfoot baby may make you laugh a lot by some of the hilarious positions they learn to sleep in. Imagine if you had to sleep with special shoes on and a bar connecting those shoes. Sounds uncomfortable, right? Well, you wouldn’t know it by looking at the clubfoot kiddos! Our daughter sleeps in some of the most hilarious positions and somehow, she finds it comfortable with her boots and bar. It makes us laugh every time!
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7. You will have the opportunity to meet and get to know some incredible doctors, nurses, and cast techs along your journey! We absolutely love going to Shriner’s and getting to see Dr. Gibson and Stephanie! We are so thankful for everything they’ve done to help our daughter through treatment!

8. You will look back at pictures of your baby’s feet before their treatment began and you will be overwhelmed with happiness for the progress you’ve seen! (Also – make sure you take before pictures, you will be glad you did). These babies are so tough and resilient. It is incredible.
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Imagine your clubfoot baby running around one day on their perfect feet! The clubfoot journey is difficult and seems impossible at times, but it will be so worth it!!

Perfect imperfections

World Clubfoot Day Happy World Clubfoot Day! Today is a day designated to bring awareness to this condition and I thought it would be a fitting day to tell others about our own little girl’s clubfoot journey.

On March 20th we found out that we were having a baby girl. Gus, Kassidy, and I were all able to be there together for the ultrasound and find out the good news! We also found out some other information that day which I haven’t yet shared with everyone. After the ultrasound we went to a back room where the doctor asked if he could speak to Gus and I alone. At first, I assumed the doctor always spoke to the expectant parents after the full anatomy ultrasound, however when he asked us to take a seat my heart completely sank. Gus and I sat down across from the doctor as he explained that we would need to go to a specialist for another ultrasound because it looked as though our baby girl may possibly have clubfoot. He explained to us that it may just be the way the baby was positioned in utero, however they would need to do a level 2 ultrasound in order to confirm it. I left that appointment feeling a little bit worried but I honestly just assumed that it was simply the way she was laying and that when we went for the ultrasound at the specialist everything would probably be fine.

When I was 22 weeks pregnant, we went to the maternal-fetal medicine specialist. There they did a very long, in-depth ultrasound which seemed to take forever. That day the specialist confirmed that our baby does has bilateral clubfeet. Clubfoot is a birth defect that affects about 1 in 1,000 infants. Of those cases, about half of these babies are born with bilateral clubfeet, as opposed to unilateral, in which case only one foot is affected. The doctor came in and showed us our baby’s clubfeet in 3D. That’s when it became real to me. The feelings, emotions, and fears I experienced that day are so much different than they are now. At first, I was completely terrified and heartbroken that our little girl would have this deformity and would need  to have her little legs and feet corrected. I was angry at myself for some reason and I felt extremely guilty that somehow this problem was my fault. Now, after much prayer, research, and talking to other moms of babies with clubfoot, I’ve been able to have a lot of my questions answered and most of my fears have subsided. Although some days I still have questions and fears, I’ve come to realize that although our baby will have a little bit of a rough start, after corrections she will be able to develop like any other child her age. All of her major organs are functioning perfectly. She doesn’t have a life-threatening disease or disorder which will be debilitating to her throughout her life.  Our baby  has a deformity which is thankfully able to be fully corrected through casts, a minor surgery, and bracing. God allowed our sweet baby girl to have this specific congenital deformity for a reason. In our eyes, she is perfect because we know she is fearfully and wonderfully made by a powerful and loving Creator.

After showing us her little legs and feet in 3D, the sonographer could tell we were upset. When the doctor left, she turned the 3D ultrasound back on and showed us a beautiful picture of our baby girl's face!

After the doctor showed us her little legs and feet in 3D, the sonographer could tell we were upset. When the doctor left, she turned the 3D ultrasound back on and showed us a picture of our baby girl’s face!

Gus and I were referred to Shriners Children’s Hospital after our appointment with the specialist. It’s not simply a coincidence that we happen to live only 10 minutes away from an incredible children’s hospital which specializes in orthopaedics. Even in that, we can see God’s provision. After our ultrasound with the specialist, they set up another appointment for us at Shriners. The next week, Gus and I went to Shriners Hospital and met with our daughter’s nurses and cast technicians who will be helping us through the clubfoot journey. There, the nurses discussed the plan of care and correction after our baby gets here. The Ponseti Method is commonly used to correct clubfeet. One of the doctors at the Shriners Hospital we will be going to was actually trained in the Ponseti Method by Dr. Ponseti himself! The severity of each baby’s case of clubfoot (or clubfeet) cannot usually be determined until they are born, and because clubfoot can range in severity from mild to severe, the Ponseti method can be tailored accordingly. Although the time frames may need to be adjusted according to her specific case and severity, the general plan of care for our baby is this:
– They will start the casting regimen with our baby as soon as we’re ready. They recommend beginning castings within the first week of her life. The nurse told us we can call them after delivery when we’re still in the hospital and before we bring her home we can come to Shriners and get her casts put on.
– For the first 6-8 weeks of her life, she will have to wear plaster casts on each leg from the tips of her toes to her upper thighs. She will most likely have to have a new cast every week (they recommend changing the casts every 5 days) for these 6-8 weeks. Changing the casts each week allows the bones to gradually align properly.
– After the serial castings, she may need a small procedure to allow the tendons in her foot to lengthen. Most babies with clubfeet require this procedure.
– The serial castings will be followed by a single cast on each leg which will need to be worn for 3-6 weeks.
– To prevent relapse, she will need to wear special bracing equipment 24 hours a day for the next 2-3 months.
– Her corrections will be evaluated and if no further casting is needed, she will transition to only needing to wear her braces at night and at nap time until she is 3-4 years old.

Like I said, each case of clubfoot is different and the Ponseti method is tailored according to each child’s specific needs. I’m thankful that we were able to meet with our daughter’s phenomenal nurses and cast techs and get an idea of what we are about to jump into. When we got to Shriners, they took us down the casting hallway and into one of the many cast rooms. They showed us molds of the serial casts and the braces and special shoes our baby will be wearing. It could have been overwhelming and scary, but instead it was extremely informative and we left feeling more prepared then either of us thought possible. The nurses and cast techs were so excited about our baby coming soon! They referred to her as their “special baby” because she’s just like any other baby, she just needs a little bit of special care at first.

Although we may not know exactly why right now, we know that God has a special reason for giving us a little girl with clubfeet. We hope and pray that throughout this journey, God will be glorified and that others will see Him do awesome things. We want to encourage other parents of children who have special needs – whether it be clubfeet or something more serious. God has entrusted these special children to special parents and He will give the grace and strength needed to get through each day.

We love our little girl. We love her from head to toe – even with her little adorable, perfectly imperfect clubfeet.

clubfootribbon Over the past couple of months, I’ve been able to do so much research and I’ve had the opportunity to learn a lot about this condition. If you’re interested in learning more about clubfeet or the Ponseti Method, you can check out the links below!
http://www.clubfootclub.org/about http://www.ponseti.info/clubfoot-and-the-ponseti-method/what-is-clubfoot/ponseti-method.html http://www.nlm.nih.gov/medlineplus/ency/article/001228.htm http://www.ponseti.info/clubfoot-and-the-ponseti-method/what-is-clubfoot/learn-about-clubfoot.html