CHD

‘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.”

‘He’s here, he’s breathing, and he has a TON of hair!’ The joy only lasted for a moment. Our son was ready to shake things up at the hospital.’: Mother learns of son’s rare Cornelia de Lange syndrome diagnosis

“There was silence. She smiled, turned off the screen, and said she would be right back. I looked at my fiancé with tears in my eyes. ‘I knew it.’ They told us our baby would have some sort of syndrome, and we had ‘no choice’ but to continue with the pregnancy. I remember feeling angry at that, ‘no choice but to continue.’ As if they had already deemed his life to be unfit to continue.”

‘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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