Congenital heart defect

‘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.”

‘He opened his beautiful, dark grey eyes, wise beyond his years. We made him comfortable, and waited.’: Mom vows ‘as long as I live, Daniel’s memory will too’ after losing son to congenital heart defect

“At the end of this long, exhausting appointment, Charity says, ‘Oh, and congratulations on your baby.’ Congratulations on our baby? You mean the one you told me is going to die? I ran out of that room so fast. Despite it all, his broken heart kept beating. I recall a single tear escaping my eye and falling on his face.”

‘We begged her to let go. She kept fighting to stay with us. ‘We’ll be together soon. You need to go home,’ we said.’: Mom says daughter suffering from CHD ‘passed peacefully in my arms,’ is ‘finally at peace’

“We went to see Cora for the last time. I washed her hair and gently cleaned her body with a washcloth. I dressed her in our favorite headband and swaddled her tightly. Her sister gave Cora a kiss on her forehead. We told her to say goodbye. ‘Bye bye, Baby Cora.’ My mom took our eldest away so she could pass with my husband and I alone. She was so beautiful, looking at us with such deep love in her eyes.”

‘She looks like she’s been submerged under water.’ We never left the hospital. Her 321 days of life were there.’: Couple welcomes miracle baby ‘hand-picked’ by his ‘perfect sister in heaven’ after she died of congenital heart disease

“My heart was telling me she was beyond tired. She can only handle so much. Selfishly I wanted to keep her, regardless if that meant sitting in a hospital or not. But the pain my baby endured was enough to rip my heart out. After a long, hard fight, she left us to go to heaven, a place we all want to be. She was only 10.5 months old. We will indeed see Berkeley again one day, and oh my goodness, what a perfect day that will be.”

‘Dear teacher, I need to apologize for my wife and I. We are going to be knee-deep in your business.’: Self-proclaimed ‘helicopter parent’ pens touching letter about why he’s overprotective of son with congenital heart disease

“His lips get blue when he’s cold, but he’s ok. I have watched his heart stop, 3 times. If you ever have to change his shirt, you’ll see the proof. Be cautious with how the other kids discuss it. He’s proud of it now – but if you let another kid steal that pride, you’ll hear our parental helicopter blades ripping through the air.”

‘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.”

‘No eyebrows and eyelashes,’ she said. I hadn’t noticed his lack of hair. She ran her hand across his sweet face. There was a concern.’: Mom learns of son’s rare CFC syndrome disorder, but keeps ‘pushing forward’

“Our midwife came in and hugged me. ‘How are y’all doing?,’ she asked. It was all too much. What did she mean by ‘abnormalities?’ I stopped her and asked. That’s when the rest of the conversation disappeared from my memory. I would NEVER let this define Nolan.”

‘Either pregnancy is harder with age or we’re having twins.’ Our son with down syndrome had just battled multiple heart failures and a stroke. ‘Actually, there’s 3.’ Um, excuse me! What the heck?!?!’ Mom delivers baby with Down Syndrome & heart defects, gets surprised with triplets 1 year later

“We went silent until I could finally ask him how sure he was. ‘Beyond 100% certain. Triplets.’ I was in tears instantly. Our life felt like a TV show playing out in real-time. How can we handle triplets plus making sure we meet our son’s medical needs? How can I continue to work full time? Do we need a bigger car? House? How is this going to work?! Excitement quickly followed. We accepted the challenge.”

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