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Premium Member
5,087 Posts
(((Hugs to you and your dd)))

I just want to respond to your post, since we have one of the things you listed. Ds has ebsteins anomaly.

He has several other major heart defects. We actually were told his first 4 years that he had tricuspid atresia. Then during surgery when he was 4 they diagnosed it as ebsteins anomaly.

The good news is that ebsteins seems to be a better diagnosis than tricuspid atresia. I am not sure how much you have had time to read. Ebsteins anomaly basically means that the tricsupid valve is present, but either malformed, displaced, underdeveloped, or all of the above.

With ds they managed to reconstruct his tricuspid valve. This was done during a long surgery, and they used filmanents of scar tissue from inside the right ventricle to form new "chordae", which are the "strings" so to speak, that pull on the flaps of a valves leaflets and force it to open or close. WIth ebsteins, the chordae apparently are not always there.

His tricuspid does function now.

Here is a link to a website about ebsteins anomaly

Here is a diagram:

Please pm me if you want to talk. I will keep you in our thoughts.

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