Hi! My fraternal triplet (we have 2 identical one fraternal) has split hand/split foot syndrome. He was born with a "split" in the middle of his hands and feet and is missing some fingers and toes. On each side of each split, he does have some fingers/toes. We are working with PT and OT and at this age (will be 2 in Sept) he is doing fine and does everything as well as his brothers. However, OT, PT, Ped all recommend surgery, which would allow him to have more of pinchers (his thumb and index are webbed on one hand and partially webbed on the other). I am a worried mom. This isn't a medically necessary surgery. He is coping just fine (this would likely just make things easier for him as he learns to write, button things... ) He was 2.9 when he was born, had chronic lung disease, a stubborn PDA that took a long time to close, and spent two months in the NICU. He is healthy now- but I hate to put him under for something not necessary, with the fear that something could go wrong.

Also, I am wondering if anyone knows of any child with this syndrome (we don't know of any- even PT/OT do not.- I would like to talk to another parent and would be interested to know how kids did both with/without surgery.

Thanks!

Amy
Mom to:
G 00
B 01
BBB 02