I have written previously about my daughter. She is three years old, 38 inches tall, 33 pounds. She was born with an ASD, a VSD, and WPW Syndrome. The WPW was causing fainting episodes so it was ablated in January '09. Her aortic valve was showing mild leakage so she had surgery for her perimembranous VSD in May '09. They estimated that her VSD would be 1-3 mm in size. It turned out to be 10 mm in size, with most of the blood flow blocked by one of her aortic valve leaflets.
Immediately after surgery her valve regurgitation was reclassified as moderate. She immediately began having high blood pressure (140s/40s). Her left ventricle began to show mild enlargement (38-39 mm), and her aorta started to show dilation. After her initial surgery follow-ups, she has been seen every three months.
She just had a visit on Friday. Her cardiologist said that the echo shows her valve leakage continues to be "moderate", but two things make him believe that her valve is actually leaking more than the echo shows 1.) her LV is continuing to dilate and 2.) they measure blood flow across the whole aorta and past the curve, and even at the end of where they measure blood flow, they can see where her blood always flows a bit backwards after each forward flow. He wouldn't specify then what he would actually estimate her valve leakage to be. He just wants her to continue on enalapril 2 mg twice a day, and be seen again in three months.
Overall, how accurate/reliable are echo results? I know her echo consistently measured her VSD to be smaller than it actually was. Would her actual VSD be considered large? If her echo says her valve regurgitation is moderate, what is the likelihood that it is underestimating the amount of regurgitation?
And what does all of this mean for prognosis, in general terms? I know you can't comment specifically on my daughter's case, but what are the most common outcomes we can expect over the course of the next few years? Can this progression stabilize?
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.
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