I take care of adults with congenital heart disease, the “blue babies” who’ve grown up. Adult cardiologists tell them, “I don’t really know what you have,” and pediatric cardiologists say “what do you mean you want to get pregnant and why are you in my office at 40 years old?”
Adult congenital heart disease is a new field, because more and more of people with pediatric heart disease are growing up and living full adult lives, and we have to think about how you care for them. I trained in both pediatric medicine and cardiology to learn to take care of them. The average age of my patients is 32. You need to practice in a different way. They don’t necessarily want to be reminded of their childhood in the hospital. They’ve had open-heart surgery as children, and now they say, “I’m too busy to take care of myself.”
The question is how do we provide tertiary level care to patients where they live. I use digital health, electronic stethoscopes, handheld ultrasounds. I can teach local doctors in communities to be comfortable treating these patients. But the big questions is how do we get that level of care to people where they live? What are the business practices of this? How do we take a holistic approach? My patients suffer from stress, anxiety, and depression from spending much of their childhoods in the hospital. It’s a big world that can come together nicely if we think about how to build those networks.