I rarely post here...but do lurk here a lot!
DS has Hypoplastic Left Heart Syndrome (post Norwood procedure and Glenn procedure), had a G-tube, and has a chromosome depletion. He has 16p12.1. We've gotten no answers whatsoever about the chromosome depletion though after many meetings with genetics. All they tell us is that since DH, who also has 16p12.1 is "heart healthy" that's not the cause of DS's heart defect...but that it has been known to cause heart defects?! They are also watching him for Autism, since according to his genetics counselor Autism has been linked to the 16th chromosome, but they say that there's so many other disorders linked to that chromosome! I usually leave their office with my head spinning - genetics makes absolutely no sense to me!
Anyways - DS is doing well now. His Fontan (hopefully last OHS) is scheduled to be shortly after his 2nd birthday!
I just thought it was time to introduce myself even though I don't comment unless it's something I'm familiar with!