Charge Syndrome

‘What does a baby’s heart look like at 18 weeks?’ I knew something was wrong. But Tad’s father continued to say, ‘Don’t worry until we have to.’ So I tried my best not to.’

“‘He is sitting Buddha style facing away from me, so I cannot not get a good look.’ I remember watching him confirm the gender, check fingers and toes, but kept going back. He told us ‘not to worry.’ I left that appointment wanting to share the great news of, ‘we’re having a baby boy,’ but it was a double-edged sword.”

‘After losing twins, we thought we’d paid our dues. Our life’s suffering was now complete. We were wrong.’: Mom loses ‘rainbow baby’ with heart defects, knows she will meet him ‘in heaven’

“We were overjoyed at my pregnancy. New life was coming! But scans and tests told us it’d come with major heart defects, a missing chamber, faulty valves, and an aorta split into 2 pieces. Blindness. Deafness. A cleft lip and palate. Still, doctors were hopeful. Until they weren’t. ‘He’s a sick guy.’ I was told this in a ‘why the long face? didn’t you expect this?’ kinda way.”

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