The ME , of course, was not a cardiologist or an expert in Congenital heart disease. And I cannot believe that our cardiologist would make the same mistake on multiple echoes. Or perhaps these defects were too subtle to be noted. I don't know.
The most interesting finding to me was that there was no evidence that he had been slowly getting worse and that we failed to detect it. His heart was the same size that it had been 2 years ago at his last appointment. (Hearts get bigger if there is more strain on them). There was no fluid in his lungs, which meant he was not slowly going into heart failure.
Our cardiologist believes that he died of a sudden arrhythmia, and that it was so quick that even if a defibrillator had been right next to him, it would have done no good. The school did all they could. We did all we could. There was nothing to be done.
I talked it over with my sister, who is a pathologist. She was extremely reluctant to give any information because she said she had very little experience in this type of situation. But she did confirm that sudden death from arrhythmia is a well-known cause of death in children who have what W had.
I'm feeling relieved, sad, and helpless. And grateful that we had him for as long as we did.