Daniel has Noonan Syndrome and Arthrogryposis Multiplex Congenita. The treatment we’re doing right now focuses on those things that are most important for Daniel’s ability to have more mobility… specifically, his legs and feet.
Daniel has severe clubfoot on one side. It’s not a common club foot (congenial/ idiopathic)… it’s teratologic, meaning, associated with a condition and involves more malformations. He’s also old enough that his bones have grown and shaped somewhat to fit their curled-under position (they are “deformed). He’s also very stiff, with much less stretch and flexibility for correction. I think it might also fit under the category of Syndromic.
His other foot has Congenital Vertical Talus, which is a very different foot. The main standing bones in his feet are “collapsed” and he has a rocker bottom foot instead of an arch. The talus bone is turned from where it should be.
Also, his knees don’t bend. Well, maybe up to 30 degrees on his good side. Getting to 90 would make such a huge difference in what he can do. That tightness in his knees affects his feet too.
Anyway, all that to say that we took 18 months to track down a specialist who is going to have the best chance of getting his feet functional. We found a doctor that specializes in unusual feet and people like Daniel. She collaborates with all the other doctors whose names come up in the arthrogryposis and CF or VT communities and I heard a great deal of positive feedback about both her and her team. She’s a doctor people ask opinions of if they’re treating a foot that doesn’t look “like a foot.”
If you’re a club foot mama, Daniel’s treatment is going to look different than your experience, because his body is pretty unusual/different and he has a lot going on.
What is the treatment?
1. Stretch casts. These are awkward, uncomfortable, and somewhat painful on the first couple days. The feet (and knees, in this case) are casted with a gentle stretch in the direction they need to move. That’s it. We’re staying here on the east coast (we live on the west), in order to change casts twice a week.
2. Tenotomies: The day before we fly home, Daniel will go in the OR for several tenotomies. His feet are stiff and malformed… this should hopefully get his feet over a point they would move on their own. He will wear casts to hold their new position for roughly 3 weeks. (And then I fly back again.)
3. Braces: Daniel will likely wear braces for the rest of his growing years and maybe beyond. They will hold the corrected position, but allow freedom to live and grow. When we come back in 3ish weeks, we’ll remove casts, and fit him into his custom braces. We’ll stay another day to adjust them for any issues we notice in the first day of wear.
4. Repeat. Daniel’s feet are not going to be 100% corrected after this. The goal is to get them corrected enough to be braceable… and to get him back out of casts to live and grow and strengthen and be a little boy! This is going to help him WALK. In 3-6 months, we’ll be discussing what the next step of treatment is. Maybe more stretching casts. We’ll have more surgeries too, but I’m not sure when. There will hopefully be more and more time between appointments as we approach whatever is Daniel’s best foot “shape.” The fewer and more minor the surgeries, the better, long term. I anticipate that he’ll need some more “significant” care for his legs when he’s in his teens.
His knees are not an easy fix and we’re not sure on them yet. The amount of stretch we got with this casting is impressive and I’m eager to see what life is like with knees that can bend more than a few degrees. If he needs more bend to do what he wants, I’m not sure what we’ll do. One option that came up is a femoral shortening surgery, which scares me a bit, so I’m releasing that to my future self to deal with.
Sorry no photos… I’ll add them when I’m not working off my cell phone.
For those wondering, I’m pleased to recommend Dr. Reid-Nichols at Nemours duPont hospital in Delaware.