palliative care

‘It is ok darling girl, mummy and daddy love you.’ She took her last breaths in our arms.’: 10-month-old baby girl dies from incurable brain condition Miller Dieker Syndrome, ‘She had a life well lived’

“My husband said, ‘We want our baby to feel the sun on her cheeks, the wind in her hair, the love all around her.’ And she really did. Lily’s smiles are the best thing I will ever see in my lifetime. I know that. We cuddled her until she was gone. I was sobbing, crying out, ’my baby, my baby!’ We bathed her and spent one last night together. She looked so peaceful, like she was sleeping.”

‘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.”

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