Scarlett has Tetralogy of Fallot with Pulmonary Atresia. That means that her pulmonary artery did not form when she was in my tummy. So, when she was born, the right side of her heart was pumping blood and it was going nowhere except to the left side of her heart, then the left side of her heart was pumping un-oxygenated blood to the rest of her body.
In a normal heart, the right side pumps un-oxygenated blood to the lungs (via the pulmonary artery), where it picks up oxygen,.. then the blood comes back to the heart through smaller pulmonary veins/arteries, to the left side of the heart (now fully oxygenated), then the left side of the heart pumps the oxygen rich blood to the rest of the body (through the aorta).
In the following picture, the Pulmonary Artery is shaped like a letter "T". Scarlett has the left and right side of the "T" (the branches), but not the vertical part (or the main trunk) that connects it to the right ventricle.
The reason why I want a full repair is because it means Scarlett can live more of a 'normal' life. Right now she is still considered high-risk because of her shunt. She is being kept alive with a tiny piece of plastic. That piece of plastic can get infected, can develop clots, can develop leaks, etc.. So in a preventative measure, Todd and I keep Scarlett completely sheltered from the world. Scarlett basically only leaves the house to go to the cardiologist or the pediatrician. It is extremely rare for us to take her anywhere else. We simply can't risk her getting sick and something happening to that shunt.
Since Scarlett's main pulmonary artery is absent (pulmonary atresia), the surgeon is going to implant something called a homograft (donor tissue from human or pig cadaver) to replace the pulmonary branch that never formed. The use of human (or animal) valves usually means less risk of infection, but is a more complex surgery than other valve repair or replacement procedures.
So, if they do a full repair, that means she won't need surgery again until she's 3. If they just replace her shunt, then she'll probably need surgery sooner to replace it again.
Of course all of this is just my speculation. Our surgical consult is tomorrow morning. I will write more details after I talk to Dr. Cleveland .