Hi there. i'm fairly new to this board, but am so glad to have found it. My son Darren was born 2-27-02 with a rare genetic disorder, EEC syndrome, which involves cleft lip/palate, and clefting of hands and feet. His feet are not clefted at all, but his hands were. He's been through 2 surgeries (first was bilateral, both hands done at once) and second was to separate syndactyly and give him a new pinky finger. His left hand was missing middle finger only, and his right hand was missing middle finger plus syndactyly of 4th and 5th fingers, but the 5th (pinky) was basically just a nail and that's all.
At first we were told that he'd never be able to do the surgeries because of growth issues (the first hospital told us not until he'd hit pre-teen ages), and then we moved (we're a military family), and the next hospital said that we could have it done ASAP. Of course after much research we opted for early surgery due to the benefits of early surgery and of course greater hand function earlier on. Soooo,
now we're 1 year post op for his first hand surgery, and almost 1 year post op for his second hand surgery. Right now he's 2 1/2 years old.
Just curious...He wears a hand brace to help stretch the tendons, ligaments and muscles on his right hand where the syndactyly was. That finger still has some contracture in it, and I guess always will. Jsut curious to know if anyone else has ever worn a hand guard/orthotic device for this very reason. he does wear it at nighttime wihtout any problems (thank goodness!), and it does seem to help.
anyone out there with same issues? So nice to have a board like this. :)
Mom to Darren, EEC, 2-27-02
Bobbi, nca, 2-24-95