We went to the cardiologist today and were officially diagnosed (previous was best guess by radiologist, OB, etc) Evan does indeed have a congenital heart defect but it’s not hypoplastic left heart syndrome. He has a much more rare (1 in 25,000) defect called Tricuspid Atresia with Left Transposition. It’s two parts, 1) There is no tricuspid valve and 2) His left and right ventricle are transposed, meaning on opposite sides.
I’ll be updating the website with new information but it’s going to take a little while as this is much more rare and hard to find information about.
Important to note… this still means lots of open heart surgery for our young one, but it sounds like although it’s more rare, it has a little less risk. Stay tuned.
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