Hypoplastic left heart syndrome

‘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.”

‘Thank you for taking a child in need.’ Without missing a beat, my husband replied, ‘We needed her more.’: After battling infertility, infant loss, failed adoption, couple adopt their ‘forever daughter’ from foster care

“Our phone rang. ‘I have a 16-day-old baby girl ready to be discharged…’ Truth be told, my husband and I agreed we wouldn’t foster an infant. NO WAY would we experience infant loss…AGAIN. We came up with so many reasons to say ‘no.’ We had a big vacation just 3 weeks away, 2 children under 2. The list goes on. We had 5 minutes to decide. Our hearts were heavy.”

‘What does a baby’s heart look like at 18 weeks?’ I knew something was wrong. But Tad’s father continued to say, ‘Don’t worry until we have to.’ So I tried my best not to.’

“‘He is sitting Buddha style facing away from me, so I cannot not get a good look.’ I remember watching him confirm the gender, check fingers and toes, but kept going back. He told us ‘not to worry.’ I left that appointment wanting to share the great news of, ‘we’re having a baby boy,’ but it was a double-edged sword.”

‘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.”

 Share  Tweet