History: daughter age 2 years 11 months. Born with an small ASD, moderate-to-large VSD, Wolff-Parkinson-White Syndrome. ASD closed on its own by 18 months of age. VSD consistently appeared to be growing smaller on echocardiograms from birth through 2 years of age but some aortic regurgitation was beginning to show, classified as mild. Had a radiofrequency ablation at 2 years 3 months for the WPW due to frequent fainting episodes. At that time though her AR was still showing as a stable mild on echocardiography, her cardiologist felt it was getting worse by physical exam (stethoscope) and recommended closure of her VSD with OHS.
During her surgery, it was determined that her VSD had never decreased in size--- rather one of the leaflets of her aortic valve was being pulled into the VSD and blocking blood flow across the VSD making it appear smaller by 2-D echo. In the coming months post-surgery, her AR has been reclassified as moderate and we were recently told that her LV is now 37 mm and therefore "slightly enlarged". She has been prescribed enalapril 2.5 mg twice a day since her surgery due to persistent high blood pressure post surgery (130s/40s) and to help her heart function more efficiently (? as explained to me). Her blood pressure is now in normal range.
I am looking for more understanding of LV "enlargement". What are the normal ranges for this age? What are elevated ranges? How frequently does aortic valve damage and regurgitation heal itself when secondary to a VSD and the VSD is closed? Is there any way to determine the most likely scenarios for moderate AR with a slight LV enlargement over 5 or 10 years? Before her VSD surgery, we were told that while she would be in a higher risk category for eventually needing a valve replacement, that wouldn't happen until well into adulthood. After her VSD surgery the surgeons said there was a "good chance" she would be back as a pediatric patient for a valve replacement, and in the ensuing months the only prognoses the cardiologists are willing to give is a "let's wait and see what happens over the next year and these things are impossible to predict."
I'm not looking to "hold" anyone to a prediction or carry a crystal ball. But we went from being assured that the VSD closure would pretty much be the last hurdle until well into adulthood, to suddenly having a child being placed indefinitely on an ACE inhibitor and cryptic "we'll sees." I don't see a general Internet search as productive use of time, so I am hoping some one might be able to give me some general ideas about LV enlargement and function and how Aortic insufficiency and regurgitation can either improve or deteriorate in childhood. What could we be looking at over the next few years?
Currently it is an enlarged chamber--- we were told it is slightly enlarged because of the additional end-load volume it is required to carry because of the additional blood it receives from the back flow of the aortic regurgitation.
If the chamber is enlargeddue to an abnormal valve and the valve is replaced/fixed I would guess that the chamber size would go back to normal. I would certainly ask your pediatric cardiologist about that possibility. You do not want the enlargement as a chronic condition; it's one of the forms of heart failure. (Dilated Cardiomyopathy). Children don't usually do well with Cardiomyopathies because they are still growing; it's always better to be given that diagnoises as an adult. (not that that's a good diagnoses to have in the first place) If her chamber is enlarged I would certainly ask her pediatric cardiologist what kind of a prognosis your daughter will have if they decide to 'sit back and wait to see how things will go"!! That's your daughter, you live with her and you love her. If you are not going to a University Hospital pediatric clinic for CHD, I would head in that direction. They are more capable, under most circumstances, in handling any kind of cardiomyopathy in infants and children.
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