Hello,

my name is Crystallann and my Husband’s name is Aldo. We are the parents of Rosalie who was diagnosed with bilateral clubfoot when I was 27 weeks pregnant. Clubfoot was something new to our family and we were scared coming into the process. Rosalie has an older brother named RyLee and younger sister named McKenily who loves to be involved in the process. I remember our first visit when she was only 1 week old. I remember thinking to myself that I just couldn't do it. When Rosalie was born, I remember the first thing I did was look at her feet. I will say, I instantly feel in-love. A complete different type of love than when I gave birth 3 other times. To me, clubfoot as a newborn is just seriously the most adorable sight to see. I refused to get them fixed. I struggled in my own mind on what the “right” thing to do was. My heart was truly set on loving this miracle just the way she was. I quickly learned of the dangers when clubfoot is left uncured. He struggles down the road would have ultimately left her the inability to walk, or walk accurately. This would have meant, no sports or even running at all. My heart sunk in and I just cried. Knowing what I know now, I just want you to know that this is completely normal. At one point, I blamed myself. My body, my genetics. I was wrong.

Our family made our way to Shriner’s Hospital in Salt Lake City, Utah where I was under the impression that it would be just be a consultation visit. I was wrong again. Our first visit was our first casting. I was not ready at this moment but I knew if I had left then I would not have had the strength to come back. This day we learned more information than I could intake. A week passed by and our second casting was no easier than the first. I believe I was more emotional this day because I knew what to expect. My daughter has one foot tighter than the other and it was hard watching every time. I sought out support in every which was I was able to including other parents there at Shriners. We meet other families who were at the same stage and some further ahead. We even got to see children who were toddlers and I couldn't help but stare at their shoes, the way they walked or ran. I just stared. If you were one of those parents, I apologize today! Minutes turned into hours turned into days turned into weeks and soon enough, I look behind me and months. It has been 14 months since we started our long road. I can not believe where we stand today. Rosalie took her first steps around 9-10 months old and was walking at 11 months. Right before her 1 year celebration, she was re casted for relapsing and I will tell you why. ME!

Somewhere from 9 months to 11 months I just stopped the 14 hour wear. Why? because im a softy!! My daughter knows how to work me. She knows how to make me give in and cave to her every needs. One day I just stopped with Rosalie’s BNB wear. Not on purpose, but it was. I did not mean any harm by doing so but eventually it just became routine to not wear any BNB. At her 12 month check up, Rosalie had relasped and needed to be re casted, this time using plaster and fiber glass. She was casted in such an odd position where her knees were bent and feet were turned outwards. This made it complicated to walk especially as a new walker. The cast weighed what she did. This was also hard to watch but she eventually she began to start walking again and she was a fast mover. I have come to learn that this process was more hard on me than it was for our daughter. It took longer for me to adapt and cope than what it took her.

We have a daily routine that helps with calming Rosalie while we put on her braces. My husband is a Massage Therapist and through him we are able to better help Rosalie with the whole process. We wear braces at night for 12/14 hours, and braces are put on right before bed. We do put them on while she is awake but every child is different and some parents place the boots on while the child is asleep. Whatever works for your child is whats best for them. Massaging and stretching out the leg(s) and feet are an important part of this process. Many parents are not aware they should be doing this. Our family starts by massaging her thighs and shins/calves. This gets the blood flowing through her muscles allowing more movement for us. Kneading the thighs in a back and forth motion really helps. Same to the calf. Its important to do both sides even if your child is only lcf or rcl because it provides balance. This is just a warm-up to our stretches. Next we hold the thigh down straight and flex the foot upwards. My husband is sure to stretch out each toe individually. He also uses a “j-hook” technique where you take your pointer finger and inch it upwards on the foot and thigh. Almost like a caterpillar. This is a basic stretch. If you have a newborn/ infant, instead of holding down the thigh, you can take your pointer finger and thumb and hold the heel of the foot and continue with the same stretch (videos have been provided) Be careful. In newborns and infacts their feet are super sensitive as they dont get touched much since tehyre inside of the casts for most of the time. Some babies will cry because their feet are that tender. Do not be discouraged. Eventually this will become routine for them as well and will help when it comes time to being a walker. Not stretching can cause a delay in walking.
Today, we are still in 14 hour wear and we have learned the importance of the wear. This has been a long journey filled with mostly sleepless nights and crying from both of us and our child. I am hoping to raise awareness for other families who are experiencing our story as well as inform our community of what Clubfoot is.