I am no expert , I'm stumbling my way through the minefield myself. I bumped into a couple with a tcs child in a store once, they told me that tcs children could have heart conditions. I got my community health doctor to find out about it. We went to the sick kids hospital library and looked up on the internet, she was looking up loads of medical stuff, I do remember we came across a couple of papers that someone was doing that was connected to children with tcs and missing/deformed limbs. Obviously we did not pay much attention to it as was not relevant to my son.It was apparantly very rare and I think my doctor said something that she thought it could be because they had other problems on top of tcs, but she was just speculating. Have they did a genetic test yet? sorry I can't be of more help, but you are right to question your doctors,my experiance is if thet don't know rather than admit it they will just stumble their way through it.GOOD LUCK