CHD

‘I put you in your mom’s arms so you could be snuggled while you drifted off to sleep. I hid behind the curtain and shed silent tears. I still hear the echo of, ‘I’m so sorry, but he is gone.’: Nurse recalls ‘absolute honor’ of caring for CHD patient

“I remember every single detail about this day. I knew what I was coming into, but in no way was I prepared for it. Your nurses before me had gotten you so handsome, dressed for your family. You looked so small in that big bed.”

‘We are having a problem. Your baby is floppy and turning blue. She only has a 50% chance of surviving through the night but we’ll do everything we can.’ 

“I woke up suddenly to the sound of my husband’s footsteps coming up the stairs to give me his phone. ‘Something has happened to Drew. He’s had a seizure. We were on our way to the park.’ I remember thinking to myself, ‘I have experienced seizures in the past. He’ll be OK.’ Second phone call. Everything was a blur.”

‘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.”

‘There’s no way! She’s crazy. I’d know if my baby had a genetic syndrome.’: Woman discovers son’s heart condition after chance social media message

“The doctor squeezed his little heart between his fingers. He came back, but my baby didn’t look like my baby. He was blue, but pale at the same time. Machines beeped. Alarms sounded. I looked it up to see other children’s pictures. You know that feeling where you’re so shocked you could cry, but nothing comes out? That’s where I was. I wanted to scream.”

‘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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