When in doubt

Where we started: 

 Pearl was born with severe atypical bilateral clubfoot. Many children with feet like hers have underlying neuromuscular or connective tissue issues that are hard to pinpoint or the clubfoot is connected to another syndrome like tethered spinal cord. Pearl's gluteal cleft is asymetrical and we are waiting until she is about a year old to evaluate for possible tethered cord. Next week, we see a geneticist to evaluate whether or not we have a connective tissue disorder that could be connected to her feet. She has good range of motion and flexibility now, and I have no doubt the brace has played a vital role in that. The brace also continued to correct her feet after the casts came off following the tenotomy (heel cord release). We've monitored her progress with x-rays and photos. She sees a physical therapist each week who assesses her flexibility. Recently, I became concerned because the creases on the bottoms of her feet are persisting. I took her to the local orthopedist and he doesn't think she needs casts but he was concerned that she didn't have enough external rotation of her feet to properly stretch the Achilles tendon (relapses occur because the tendon gets too tight during growth spurts). He also commented that braces can't or aren't intended to correct feet only hold correction. He is correct to an extent. The traditional boots and bar brace does not correct feet. It was designed to hold correction made from casting the feet. The DTKAFO brace is different.

Venting Side bar: I gave him the technical paper on the brace, x-rays, pictures and contact information for Cunningham Prosthetic back in April. It is clear to me that he didn't look at any of that information and doesn't care. He suggested we switch to the traditional brace more than once in the 20 minutes we were in his office. I've heard of doctors reporting mothers to CPS for choosing not to use the traditional brace and babies being blacklisted from every orthopedist in a state for the same reason. Certain vendors of orthopedic braces are now refusing to sell components for alternative braces due to pressure from a handful of influential physicians. Progress is stifled by such resistance. A recent study indicates that baby feet adapt quickly to changes made by casts and that a week long casting period isn't necessary (they placed pressure sensors in the casts). The results indicate that casts could be applied over a shorter period of time, reducing treatment time from 2-3 months to about one month. The study also discussed how a brace could be designed to do the correction based on that information. When the researchers approached orthopedists in their country about it, they were dismissed. 

Progress and where we are now: Pearl started wearing braces in December 2017. After only 3 weeks we began to see improvement in her feet and it was clear that the braces were correcting her feet. We took x-rays at the beginning of bracing and after two months and will take them again soon. Those are discussed in a previous post. While the braces have helped, and other moms have told me feet like these are a process, I began to wonder if we'd reached a plateau with correction and talked to Jerald about making adjustments to the braces to help continue her progress. When I work on her feet I can stretch the plantar surfaces so that the bottoms of her feet become flat and the creases almost completely disappear. When she stands on them, they flatten out properly as well. Her heels are slowly dropping into place which is also a common issue with clubfoot babies. They often have "empty" heels because the bone that belongs in the hind foot is elevated inside the foot and out of position.

I asked Jerald if we could modify the foot bed to
 provide that plantar stretch while also adding more force to abduct her feet outward (think duck walking). We sent the braces via fedex on Wednesday and received them today. The foot bed has been modified to extend her feet outward and a wedge has been placed at the front of the foot bed to raise her metatarsals to stretch the bottom of her foot. The straps were modified to facilitate this stretch as well. We are taking the braces off every two hours to check for pressure points and red skin and to give her time to adjust to increased stretching and changes in sensations in her feet.

Why the status quo isn't good enough: There is no cure for clubfoot. It is caused by a change in the cellular structures of connective tissue, muscle fibers and how those tissues are enervated and receive blood and nutrients. Adults with clubfoot are more likely to develop arthritis and this is exacerbated by scar tissue from surgeries and lack of flexibility in the feet. Some adults experience such debilitating pain that they end up in wheel chairs or opt to amputate. The research on success rates in the traditional brace is skewed because they don't follow patients long enough, counting successes as no relapse up to age 5. In reality, children should be followed through puberty. I am certain Pearl would not have tolerated the traditional brace and she would not have the range of motion she has now if we used the static boots and bar. Stay tuned to see how the latest modifications to her braces make a difference.