Coming into this visit our hope was that Melia's MRI would show a healthy functioning left ventricle with a thickened muscle from the pressure created with the PA banding she had last May. The goal of that surgery was to strengthen the muscle of the Left Ventricle so that some day her heart would be ready for a Double Switch operation. If you recall, right now her right ventricle is pumping blood to the body (the hard job) and the left ventricle is pumping blood to the lungs (easier job). Without first beefing up the LV it would be ill prepared for the hard work of pumping blood to the rest of the body.
Coming into this visit I was also beginning to wonder if the Double Switch Intervention was appropriate and advisable for our healthy-appearing daughter. From the little that is known about the future of CC-TGA babies it seems that internationally the approach to care is more of a watch and wait whereas the US seems to be aggressive at intervening earlier in the hopes that long term outcomes will be better. The reality is no one knows what is best, but we do know that without intervention the majority of people with this anomaly will have early heart failure. The hard thing for a parent is trying to reconcile putting your running, dancing, happy child with no shortness of breath and no blue lips through a risky surgical procedure. But, today reminded me in a good way that my daughter's heart, although wonderfully and beautifully created for purposes I can not even begin to fathom, is not normal and healthy. I want to give her my best and right now, given the country she lives in, the resources we have available to us financially and the wisdom being given to us by surgeons and doctors we feel it is to appropriate to move forward with invasive treatment in an effort to prolong her precious life.
That said, this is the report we got...
The ejection fraction (how well the ventricles pumps blood) for both ventricles is good (no heart failure). The left ventricle mass has increased but unfortunately not as much as the doctors had hoped. One question is whether the PA Banding increased the mass or if it was more a function of her growth alone that increased the mass. Either way it is not enough to proceed with a Double Switch this year and so the surgeon and cardiologist will be discussing whether or not another PA Banding is appropriate or if we should just watch and see if as she grows the band will naturally get tighter and thus strengthen the LV. At the same time the volume of the LV is increasing. This is okay but we don't want the volume increase to get ahead of the mass increase because that could lead to heart failure down the road. We also found out the tricuspid leakage is less and the VSD is almost gone, probably as a result of the muscle getting thicker.
We will have more recommendations to work with next week when we hear back from cardiology and surgery. My hope is that they will not see a clear reason to intervene with another PA Banding and that after 6 more months her heart will have strengthened enough in mass to be able to withstand a Double Switch. Only time will tell.
If you read this and are so inclined, your prayers for Melia's journey through the world of CHF, wisdom for us as we make decisions as well as wisdom for her doctors and advancements in the care of her condition would be so greatly appreciated.
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