heart warrior

‘When he is older, how do I explain this?’ We handed over a tiny 3-month-old for his first open-heart surgery.’: Mom of heart warrior thanks those who helped, ‘He lived, and so much of that is due to all of you’

“He shows his scar to everyone. Sometimes he will say, ‘I saved Mommy from a great white shark, look, guys!’ Other times, he just tells people, ‘I had heart surgery!’ The first question immediately is always, ‘Did it hurt, Finn!?’ He just sweetly replies no and then wants to play. He lived. We all did.”

‘You’re lucky he didn’t die in his sleep. He is 1 in 6 billion and will be bedridden for life.’ I clenched my husband’s hand in disbelief, tears welling in my eyes.’: Mom praises medically complex son, ‘He is our little heart warrior’

“He was lifeless and pale. The clock was ticking. All we could do was pray and hold his little hand. Sitting beside his hospital bed, 3 genetic doctors in white coats rushed in. ‘Can we go to a private room to talk?’ I walked down the hallway in a fog. ‘We were wrong. It’s severe. He will never live independently on his own.’ Soon after, he had a stroke and began seizing up. This was the worst-case scenario. It was really happening.”

‘Mama, this is the guy from the airplane I made friends with!’ She called Greg her BFF. Only 4 months later, she was dead.’: Mom wants others to know the impact of ‘difference makers’ after daughter dies from heart surgery

“Our precious Amie was approaching her next open heart surgery. ’Wanna play hooky from school?’ She excitedly said, ‘Yes!’ I secretly handed the next note to one of the most amazing difference-makers ever. He wanted to introduce the ‘celebrity’ on board. The look on her face was beyond amazing. This would be the last adventure we would ever be able to take together.”

‘Your baby’s heart is on the wrong side.’ I cried. ‘PLEASE be with him, I don’t want him to be alone.’: Mom devastated to learn of newborn’s heart defect, wishes she could ‘take his place’

“The sonographer went very quiet and kept putting her body in strange positions. She said the baby was laying awkwardly. We had to sign papers prior to his surgery warning us of the risks… death being one of them. We were so helpless. He was so tiny. It didn’t seem fair. I was so excited to see my little boy and give him a big kiss.”

‘If this ruptures, it will kill your wife and baby.’ My wife looked at me. ‘Save the baby.’ Our excitement turned to dread.’: Mom births baby with Complex Congenital Heart Disease, dad in awe of son’s ‘strength, resilience’

“Two months before our due date, I heard my wife scream, ‘Brian, come quick!’ I hurried upstairs to find her crouched on the bathroom floor, groaning in pain. After hours in the waiting room, I was called back to see her. Even under all the stress and exhaustion, she looked beautiful. ‘Can you handle a child like this? With heart defects?’ We both answered, ‘Yes.’ We never felt so scared in our lives.”

‘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.”

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