as the mom to a 28 year old survivor, it to feel we are lacking doctors with CDH medical experience in adults. I feel that doctors have in the past felt that if your child survived then all CDH concerns are over and they are "cured". Breathing issues are from asthma and not CDH related. My daughter had a simple pulmonary function study and failed it three times. I was not with her but she said she had to "blow leaves out of a tree". They said it was from her asthma. How do they know without further testing. Maybe it is her asthma but I do wonder if her lungs are not functioning well due to her CDH. Probably would treat it the same way but it would be nice to know for sure. We love our Family Practice Dr but wish he would be more proactive. He just says he doesn't think it is CDH related at all. Then let's find out for sure! Ok, enough of my soapbox. Yes, adult survivors are lacking knowledgeable care. Hopefully with more children surviving they will come a time adult drs will have more knowledge.