CHD

‘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.”

‘The magnitude of your child being born. No words. She did this for us, TWICE.’: Mother overcome with emotion watching surrogate deliver second daughter, ‘I gained a bond I never even knew existed’

“It was 6 months post my 4th open heart surgery. I was celebrating turning 26, a milestone my mother and doctors never thought I’d reach. That night, I met Ryan. ‘You don’t want to be interested in me. I have a lot of baggage.’ He replied, ‘What do you mean?’ ‘I’m probably going to die soon.’ Within 8 months, we were engaged. Not everyone approved of us looking for a surrogate, you know, because ‘I might die soon.’”

‘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.”

‘Finally, just my mommy and daddy.’ He sighed, before taking his last breath. We whispered, ‘We love you.’: Mom gets sign from baby in heaven moments before giving birth to rainbow baby daughter in hospital

“The day of the c-section I told my husband, ‘He will be with us, just keep an eye open for signs.’ After tear-filled moments in pre-op, we stopped in the hall. I laid there praying, staring up at the ceiling tiles. Just above me was a small sticker on an air conditioning vent. That’s when I saw it. In that moment, I smiled, so relieved. I knew he was here, watching over us.”

‘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.”

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