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?