To answer your question, echocardiography gives us a fair estimate of the degree of valvular regurgitation, BUT it is not completely accurate. We use several different makers to be able to give an estimate of trivial, mild, moderate, or severe as an amount. However, it is not a numerical amount, which has plagued echo despite newer technologies. And, it can underestimate the degree of aortic regurgitation at times; the fact that some reversal of flow after forward flow is seen suggests that it is AT LEAST moderate, if not severe. A much more accurate assessment of the amount of leakage is demonstrated by cardiac MRI (in experienced hands).
However, in the end, the exact amount is not nearly as important here as what the longitudinal results of therapy are over time. The main result that we watch is the size of the left ventricle and its response to treatment. If there is interval improvement, then we typically observe patients. If not and there is worsening, we tend to look toward one of two options: either increasing therapy or waiting till it gets to a tipping point where surgery really should be done before permanent damage occurs. My recommendation is that you discuss the plans with your cardiologist to find out what he is thinking in regards to this. I will say that we do try to avoid surgery for the aortic valves in children this young, only because aortic valve disease is a lifelong problem with continued need for some sort of intervention. That said, we also don’t wait for things to get worse until there is irretrievable damage. If you feel as if you are not getting the information or care that you want for your daughter, then I would recommend obtaining a second opinion.
Thank you for your answer. You advised me to ask her cardiologist what he is thinking, and I believe that is the crux of the problem: I have asked him repeatedly for his thoughts on this matter, yet beginning with her surgery last May he will tell me nothing about what he is thinking beyond "Let's see what happens between now and her next appointment". I have no reason to doubt that he providing her appropriate care and I don't expect anyone to have a crystal ball; however the complete lack of information is hurting my ability to appropriately manage family expectations for both short-term and long-term plans of care. This is the only practice in the entire southern part of Colorado state, but I see we will have to consider traveling for a second opinion to get our questions fully answered.
Thank you so much for time and willingness to educate.