Sam was born with Hypoplastic Left Heart Syndrome (HLHS), Double-Outlet Right Ventricle (DORV), Vein Atresia (he had the very rare occurance of just completely missing the veins that take the oxygenated blood from his right lung back to his heart), Hypoplastic Right Lung, as well as a cleft palate and undescended testes.
His HLHS and the associated DORV were found at the 20-week ultrasound. His vein atresia and and hypoplastic lung were not found until his Norward Sano surgery - well, sort of found then. Sam's surgeon said that he was sure the veins were there, but just in a different place, or something, after he had finished Sam's surgery. It wasn't until more than a month later, when Sam could not stay off the ventilator that they cathed him and discovered that not only was his lung indeed extra small, but that the veins were completely missing! Apparently eventually the blood would drift out of his lung to his chest wall.
Sam's microchromosomal tests came back showing that there might be some problems at first, so they had us, his parents, send in our blood, too. It turns out it Sam had a variation that my husband has as well, and probably Sam's grandpa - and they are "heart healthy", so really Sam's chromosomes are fine, even though he really looked like a "syndrome" (but nobody could fit it into a recognizable, known syndrome).
. . . I don't know if this story is really going to have a flow to it. . . I have to do it in parts, to get my feeling out.
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