CDHers growing into adulthood & health care

Hello CDH community,
My daughter Jamie is almost 18 and she has had many surgeries over the years due to CDH related issues. The most recent a bowel strangulation due to scar tissue. I asked the surgeon on our post op visit if CDH patients could continue to be patients with Children's like CF patients are (for life). He could not assure me that my daughter could continue to get care from the very doctors the have experience with CDH patients. He stated that there aren't many patients (CDH survivors) 18 and older. What is your experience with adult CDH care? How many of you are or have kids that are 18 or older? Should we be looking into this matter?

This is a big concern for our adult survivors of CDH, for once they hit 18, many of them no longer can be seen in pediatric hospitals and have to find care. Many that do have lasting medical issues and are in the need of checkups still find it difficult to find doctors experienced in CDH care. Jamie's doctors now should be able to give you referrals or know if doctors that may have experience with CDH kids.

What I have seen over the years of volunteering for CHERUBS, adult CDH is lagging and there is a big need for more experienced doctors across the world for CDH care. I see adults struggling for pain for years, for they can't find doctors that truly listen.

Transition out of the pediatric system is one that I dread and we are still 7 years out.

Hope Jamie is able to find the right care for her as she enters adult hood.

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.

This is also my big fear for Lizzy in 5 years, I know our ped has kept some patients with complicated histories. I agree with Tracy that asking the doctors your daughter has now for suggestions. Hope Jamie finds can find someone willing to listen and knowledgeable about CDH.
Tracy is there a thread started where adult survivors could put there experienced CDH doctors on to help other CDH families, like a doctor data base

I don't think we have started a thread, something to do....just not sure how many would see it?

Maybe a good question for the facebook page, will have to pass it along to the CPAB to post.