heart defect

‘All they see is ‘locked in his room’ and immediately jump to ‘savior’ mode.’They call CPS without knowing the damage it can do.’: Mom of bipolar, autistic son advocates for mental health, ‘Each victory makes us stronger’

“He has been up till 2:00 a.m. every night the past four nights. I can see the exhaustion in his eyes, but his brain is on rapid-fire mode. I feel like a horrible mom sitting on the floor in the hall outside his room, which is locked, listening to him.”

‘We can’t do anything else.’ I was 18 with a deceased baby. They pulled a drain tube out and her little belly filled with blood.’: Teen loses daughter to congenital heart disease, donates 455 oz. of breast milk to save sick NICU babies

“She had open heart surgery at just 1 day old. I was terrified. My little girl was on full life support. ‘Why would God give me a sick baby?’ She was bleeding out. I decided to turn something so painful into something beautiful. Even though I couldn’t save my baby, I decided I could save others.”

‘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.”

‘She took her last breath in her daddy’s arms. She was absolutely beautiful, perfect. I wouldn’t survive.’: 18-year-old parents lose daughter at 20-days-old, says ‘you never get over it’

“‘There is nothing more we can do.’ We counted her tiny fingers, toes. She had my nose, and the most stunning blue-green eyes. We held her hand, stroked her hair. It was the first and last time my husband got to hold his daughter. The little girl whose name he chose. The nurse wrapped her in a white blanket and handed her to me. I took in every detail of her beautiful face, holding her tiny hand until all warmth was gone.”

‘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.”

‘Is this the last time I can kiss him?’ I’d just learned my baby had Down syndrome. Now, he was blue, floppy, and not breathing.’: Mom says baby with Down syndrome, heart defects has taught her to ‘focus on the positive things in life’

“5 minutes into our drive, he began crying but stopped. I found it odd. It was a cry I hadn’t heard before. The light turned red, I pulled over. In seconds, I was down on my knees in the middle of the road, holding my floppy baby. ‘God, this can’t be it. Please don’t take my baby away!’ Giving mouth to mouth, I screamed his name for him to wake up. When he ambulance arrived, Noah was going in and out of consciousness.”

‘She’s beautiful, but something’s wrong with her heart.’ HOW? I was only 23! I clapped my hands over my face and WEPT.’: Mom births baby with Truncus Arteriosu, says motherhood is all about ‘rolling with the punches’

“My husband drove me down to the waterfront, my idea of motherhood now a pile of dust and rubble. Was I really made for this? We’d both been crying for several hours. He opened the envelope. ‘It’s a girl!’ his voice cracked. When they wheeled her away, we gave our final kisses. No matter how long she was with us, Shirley was a gift.”

‘Mom she’s gone, I just know.’ I sat on my stairs with my front door open, in shock.’: How this ‘broken’ mother helps other parents of child loss heal after her own tragedy

“Seeing my sweet baby girl laying in a huge bed, much too big for her, made me fall to my knees. A nurse said to me, ‘Get off the floor, it’s so dirty.’ I was angry at her, I was angry at the hospital chaplain placing his eerie hand on my shoulder with no real comfort. No parent should have to write their child’s eulogy, or decide between a casket or an urn. I had absolutely no idea what I was doing.”

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