Copied from B's carepages:
I'm really writing this update as a call for information, if any of you have experience with bilateral radial hypoplasia (club hands).
First, some background: Brody was born without thumbs and without radius bones in his forearms. When one does not have radius bones, the hands grow inward - at around 90 degrees (or more). The first surgical step is to centralize (ie, straighten) the wrist, so that it comes off the arm at 180 degrees, not 90 (increasing reach and functionality).
We've done that on both of Brody's arms. One arm - the left, dominant hand - is doing a great job at staying straight. The other arm has a mind of its own, and has come back to almost 90 degrees, despite the surgery.
We've consulted with Shriners and with the occupational therapists at Children's Hospital in Denver. Here is the gist of what they say: this happens. Sometimes the surgery doesn't work as well as we would hope. It's a constant tension/battle between surgical procedure vs. an arm that naturally grows its own way, ie, 90 degrees. When Brody reaches skeletal maturity, at 16 or 17 or 18, we can - if Brody wants - surgically fuse the hand onto the end of the wrist, so this issue does not reappear in adulthood.
The options we are faced with now are:
1. Re-do the surgery. Risks? Affecting the growth plate on that arm, stunting that arm's growth (his arms are already around 60% of average arm length).
2. Serial casting. Putting Brody in an arm cast to hold his hand at 180 degrees, for 3 weeks, to stretch the tendons out. Then creating a night splint that Brody sleeps in.
3. Night splint only.
We've told Brody repeatedly - since he is now at the age that he can understand what we're tlaking about at doctors' appointments - that we love his arms and think his hands are marvelous. In fact, the OT said his right thumb was stronger than his left, and he uses it more. Nevertheless, Brody says he wants the right hand to get straight. Why? Two reasons: 1. He wants it "to match" his other arm; and 2. He wants to be able to shoot webs (a la Spiderman) from his right arm.
I'm in the less-is-more camp. Maybe try night splinting to see if we get any stretch and see how it goes. The good news is that, according to all OT's, while Brody has fine motor "delays" he can do everything he wants to do with the hands as they are right now.
We're waiting to get another opinion from a hand surgeon in Denver. In the meantime, if anyone has any experience with this, we'd love to hear your thoughts!
Other than that, all is well. I had an ultrasound on Brody's little brother today - 32 weeks! He is growing right on track, with a due date of December 3. My blood pressure is still nicely controlled, and I saw the baby blink on the ultrasound, and he has hair! We scheduled the c-section for December 1, in case I make it that far. The bubba weighs as much as Brody did when he was born: 3 lbs, 12 oz. Now all we need to do is firm up a name (Brody and I have a favorite, but Jeremy is still on the fence).
Thank you for checking in!