Only 5 to 10 out of every 100,000 babies are born with what I have.

Only 5 to 10 out of every 100,000 babies are born with what I have. It's called double inlet left ventricle or DILV for short. When most people are born, their heart has two sides. One side sends blood to the lungs to get oxygen and the other sends it out to the body. But with DILV, both top parts of the heart send blood into just one bottom chamber, the left one. The right side is usually way too small or doesn't work right. This can cause oxygen-rich and oxygen-poor blood to mix together, which makes it harder for the body to get the oxygen that it needs. That can leave you tired, short of breath, or even looking a little blue around the lips and fingers. Some people mix up DILV with DORV, but they're different. DORV is short for double outlet right ventricle, and it's when the wrong blood vessel comes out of the right side of the heart. It's a different setup and a different surgery. To fix double inlet left ventricle, doctors usually use three surgeries. One is pulmonary artery banding to slow down the blood going to the lungs. The second one is the Glenn shunt to send blood from the upper body straight to the lungs. And the third one is the Fontan procedure to send the rest of the blood to the lungs without going through the heart first. I had my surgeries back in early 2000s. Back then, the 10-year survival rate was 70 to 80 percent, and a lot of us are now living into adulthood. Technology and treatment have come a long way since then. My heart doctor recently retired, so now I'm on the hunt for a new one. It's weird starting over, but I'm hopeful that I'll find the right one for me. And if your child is going through something similar, or if you were born with a congenital heart defect, just know that you and they are not alone.