“The surgeries were risky, and many didn’t make it through. None guaranteed survival.”
‘One baby’s heart is fine.’ Mom asked, ‘What about the OTHER?’ My first surgery was at 3 days old. It’s as bad as it gets.’: Woman survives heart disease, transplant, ‘Each day I rise’
‘The news was a parent’s WORST nightmare. ‘We found a tumor.’: Mom gives birth to twins, one with heart defect, while daughter battles cancer
“We were determined to give him a chance at life. They told us there was a 50% chance he would make it to 5. We accepted this as our new normal and felt TOTALLY mentally prepared. Or so we thought.”
‘He’ll be bulletproof!’ I handed him to the nurse and we locked eyes. Chaos ensued.’: Baby born with Hypoplastic Left Heart Syndrome, ‘I love to be reminded of how he lived’
‘At 6 days old, Lawson had his first open-heart surgery. My baby had been through SO much. I was ready to give him the gift of time and life. He’s perfect.”
‘But the other children are doing well!’ I’d go anywhere for him. ‘Someone must have a solution!’: Mom loses son to heart defect, starts retreat for other child loss moms, ‘It’s our way forward’
“They wanted to do multiple surgeries. The words coming out of their mouths made me physically sick. I was left in a puddle of my own tears on the hospital bathroom floor. I told him if there was help on Mars, I’d buy a rocket ship.”
‘You can choose comfort care or surgery.’ I wanted to scream. I didn’t know what quality of life he’d have.’: Mom loses baby with Hypoplastic Left Heart Syndrome, ‘He only knew love’
“’This defect is so rare, you’ll probably never see it in your lifetime.’ I felt like I was in a dream. I pinched myself a few times. What snapped me back to reality was the doctor saying, ‘I can do these surgeries, but his chance of survival is slim.’ I wanted the nightmare to end.”
‘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.”
‘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.”
‘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.”
‘At 8 months old, a common cold became too much for our daughter’s heart. She stopped breathing in her daddy’s arms.’ Daughter’s harrowing journey of survival after cardiac arrest
“We listed our daughter understanding a heart may not come in time to save her. Love and hope helped us to live through those days of uncertainty. Four months later, our gift of life came.”
