Ben, born 2011
Ben surprised us all. When he was born, we were under the impression he was a perfectly normal, healthy baby. It wasn't until his 4 month checkup, when we found a murmur, we had any idea anything was wrong. We got the bad news a month later, on Valentine's Day that Ben was going to need open heart surgery.
He was diagnosed with pulmonary valve stenosis, cor triatriatum, and ASDs. Two weeks later we were at our surgical consult. Things seemed to move very slowly after that. There was disagreement on Ben's exact diagnosis and how to do the surgery. The cardiologist said cor triatriatum. The surgeons said TAPVR. Imaging after imaging they couldn't come to any evidence to tell them which it was, and neither seemed in a rush to do anything to fix it.
Ben seemed healthy enough so no one thought more of it. I pushed. I prodded. I nagged. We got a surgical date just under two months from his first diagnosis and the surgeons agreed to make a few different plans and figure out which to follow during the surgery. This turned out to be a good thing. Ben's heart had gotten extremely enlarged. He had BOTH TAPVR and cor triatriatum, rather than one or the other. And who knows how fast things could have gone downhill considering he had never been symptomatic.
Everything was fixed. They removed the heart wall that was blocking off his left atrium, and in fixing the atrial septum, baffled the flow from the pulmonary veins to the correct sides. He had no valve stenosis, just far too much volume in the vessel. After almost a week in hospital, most of it on a temporary pacemaker, we were sent home with a happy healthy baby.
Story by Ben’s mom, Mary - Virginia