Rachael Goldring was born with congenital heart disease. Had she been born a few decades earlier, she probably would have died as a baby. Goldring is now 24 and among a population of patients who present new challenges to a health care system unaccustomed to dealing with survivors of once-fatal conditions.
Today there are more adults than kids living with some of these diseases, and medical training is lagging. Young adults who can't find suitable doctors may drop out of care, and their conditions may worsen.