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 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.
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