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don't know if this will help at all; my son is now 3 1/2; he has a perimembranous vsd (don't know the size) and is a stage 2; his still has not closed; they told us his would close around the age of 2 and that sometimes people's never close; his dr said that they rarely do surgery to close the holes any more because the risks are far more riskier; but that also depends on how severe they are; he regularly (every 1-2 years) gets checked by his ped cardiologist; we also had no history of this in our family; have done hours upon hours of looking this up on the internet and it will frighten you to say the least; would love to know more about what the dr's are telling you and how your son does; my son gets sob whenever he exerts himself too much and this scares me so bad; now we are having trouble with his blood pressure being elevated