My 5 year old son Joey was just diagnosed with a subaortic membrane. He has a very very small leak in his aortic valve. The doctor said if the leak becomes bigger or the narrowing more narrow he will require open heart surgery. We are scheduled for an echo in one year from now. What are the chances that it will leak more??? Just a concerned mom looking for some answers.
A subaortic membrane is a piece of tissue that grows out from the interventricular septum, the wall between the two ventricles. The membrane is in the left ventricular outflow tract below the aortic valve. As blood goes past the membrane, there is turbulent flow created. There is some thought that the turbulence can cause distortion of the aortic valve, which can lead to aortic insufficiency, or leakage. What you are describing is a trivial leak in the valve, which can be seen even in the absence of a subaortic membrane. What I don’t know is how much obstruction or turbulence is created by your son’s membrane.
The natural history of these membranes is typically to get larger over time, creating more obstruction and more turbulence. I can’t say for sure the actual chances of increasing leakage of the valve. We don’t have great predictive models of rates of membrane growth or of aortic valve change at this point. What I can say is that the things that are going to indicate the need for intervention will be moderate obstruction at the level of the membrane and/or worsening distortion or leakage of the aortic valve. Your son will need lifelong surveillance for this, with the hope that change will be slow or nonexistent. Of note, this has been reported in families, as well.
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