Congenital heart disease

‘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.”

‘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.”

‘Evan was suddenly tired. I truly thought he’d caught something in Mexico on our honeymoon. The word was Leukemia.’: Infertile couple adopt son, say he ‘doesn’t carry our blood, but carries our whole heart’

“We were given the news that chemo would cause us infertility. Always being the patient, I’d never known what it meant to be on the other side of it. To watch your loved one suffer and feel so completely helpless your insides were miserably aching. But that was all about to change. How did this happen? What about all our plans and the family we were going to have? I was headed down the road to be a widow before we even had a chance to experience marriage.”

‘We got the horrifying call in the middle of the night: ‘She’s bleeding from her mouth and we don’t know where it’s coming from and can’t stop it.’: Mom shares grief journey after losing twin to rare heart defect, DiGeorge Syndrome

“She’d been taken in for emergency surgery. The bleeding seemed to have slowed, but they still hadn’t found the source. ‘She’s losing too much blood and I don’t think she’s going to make it.’ But she wasn’t gone…there was still hope. The next time the doctor came in, all hope was lost.”

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