Dear Julia,
Thank you for answer these questions! How does an older survivor get involved in these studies? I'm 23 and want to help learn more. The genetic aspect fascinates me because I'm still debating on having a child of my own. I've been told that my amniocentesis was "spot on" for no abnormalities. Has amniocentesis changed in anyway in the past 23 years? Are there more genes that get look at? (Ex: 23 years ago they looked at 300 gens but now they look at 500.)

Do you know any new information about the link to diaphragm and lung development (other than organs being in the way)? About ten years ago I was in Pittsburgh for consultation about a potential back surgery and while we were there we had the opportunity to talk to a surgeon with CDH experience. He talked about experiments they were doing with cats by inducing controlled CDH to see if its the diaphragm that stops forming first which causes the lung to stop, or vise versa. I haven't heard anything else since - I was turned down for the surgery and never visited that doctors again. I doubt my parents would remember his name.

Thank you again!
- Courtney