I spent some time Wednesday talking to both our cardiologist, the surgeon from Boston and the coordinator for consultations at CHOP. We're going to do another echo in 5 weeks. After our cardiologist looks at that we'll talk some more about what options we have available. We'll also be sending that echo to Boston and CHOP so they can give us an opinion based on some clearer pictures.
This isn't like last time where we reached the stage where it was better to do surgery than to wait. Right now it would be surgery before he needs it. And as our cardiologist pointed out, before he needs it means he's not as sick, but ideally it would be right before he needs it. Unfortunately there is no way to tell when he's going to get sick so we can schedule surgery before it happens. The conventional wisdom in these situations is not to operate on a healthy kid. My understanding is Boston is a bit more aggressive than that. They see something they can fix and they want to do so. It makes sense. But my thoughts are more about the future.
What if he's stable and we can wait five-ten years? What kind of surgical techniques will they have perfected by then? Will they be able to clip the leaflets together in a transcatheter procedure? Will they have better methods for OHS? What if they get in there and find that they can't actually improve the valve function? Do they just close up and we've risked his life for no gain? Do we go ahead and replace the valve then? Valve replacement guarantees we'll be on blood thinners and starts the clock for future valve surgeries. These prosthetic valves wear out and have to be replaced again and again. On the other hand, what if his valve is becoming more and more damaged as we wait? What if doing the surgery now means he'll never have to have a surgery again? There's no way to know.
I talked through some of the risks with our cardiologist on Wednesday. I asked him about C's left side heart enlargement. I thought it was caused by heart strain, but rather it is caused by blood volume. Essentially, the heart grows as blood volume puts pressure on it forcing it to grow. His heart pushes a higher volume of blood on his left side, so the heart has grown to accommodate that. Conventional wisdom has stated that kids don't need to worry about that enlargement until it nears the size their heart will be as an adult. Once that size is reached, you don't want the heart to grow further so you should step in. We're not there yet.
There haven't been many (if any) long term studies on mitral valve repairs for kids in C's situation. There's no guarantee that doing this repair won't cause the valve to stop growing and then we'll be dealing with mitral valve stenosis instead.
I'm glad we get to delay all this for 5 more weeks so we can get a better idea of where we can go from here. I'm not ready to face all this yet.
If you can think of any questions I should ask the cardiologists when we see/talk to them again in July, please drop me a note in comments.