Pediatric Heart Expert Forum
Subaortic Stenosis
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Subaortic Stenosis

My daughter is 4. She was born with transitional atrial-ventricular defect, with a double orifice mitral valve. Her first surgery was in 2011 which closed the atrium and the ventricle part of the defect. Her mitral valve was repaired because it had some degree of regurgitation. At this stay she also required a pacemaker inserted due to complete heart block. Her second surgery was in 2013 because apparently the stitches on the mitral valve repair had ripped out. Less than 6 months later she was rushed to the hospital because she had severe/critical mitral valve stenosis, went the other way. The took the old valve out and put in a 25mm mitral valve. Get released from the hospital, back at the clinic a month later because she isn't feeling well find out her pacemaker is giving her congestive heart failure and attributing to low ef. They turned the atrium part of the pacemaker off switched the ventricular side to 60bpm. 2mths later find out she has subaortic stenosis and they don't know why. Been going in every 3mths and the mean gradients keep going up 10-12 each time were in. In about a 9mth span her subaortic stenosis has gone from being not an issue to mean gradient of 60, told to come back in 6mths for a recheck. What I want to know is why does her heart seem to generate all this excess tissue that is causing problems? I am not sure if it's scar tissue or exactly what it is but whatever type of tissue it is it grows rapidly.
773637_tn?1327450515
Dear Julsann,

Subaortic stenosis occurs when there is increased obstruction below the aortic valve due to growth of a fibrous ring or membrane.  It is unclear why this happens, but one of the theories is that it occurs when there is turbulent flow across the left ventricular outflow tract.  The turbulence causes damage and that damage causes increasing scar tissue.  We see this in patients who have a left ventricular outflow that is not straight, or is angulated.  However, it doesn't happen in everyone who has this, so there may be some genetic response to this, as well.  Yes, it can certainly grow quickly, and can cause both significant obstruction to left ventricular outflow as well as damage to the aortic valve secondary to the turbulent flow.  It is a good thing that your cardiologist is keeping a watchful eye on this to ensure that things don't get too far down the path such that it can be intervened upon in a timely fashion.
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773637_tn?1327450515
Jeffrey R Boris, M.D.Blank
The Children’s Hospital of Philadelphia
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