Hi Sherri!

No one in my family has it. My DH is adopted so we are not entirely sure of his background. We are almost certain that neither of his biological parents had it due to health disclosures at the time. So it does seem like it came out of nowhere.

Did anyone in your family have surgery? It seems like there some pretty amazing techniques out there. She is seeing a specialist. She’ll have x-rays taken when she is 6 months to see what we the entire picture is. At this point they still are not sure if she has all the bones in her fingers, etc…

May I ask where you are located? I would like to find a support group so that when she is older she can meet other kids with the same condition so she knows that she is not alone. My DH and I forget about it most of the time which I guess is a good sign. The specialist said that if we treat it like it’s not a big deal then it won’t be.
I would love the links. My address is lisvarner77@yahoo.com. Thank you!