chd awareness

‘Is it the right decision?’ They came to take her. I stood, paralyzed, and watched as she disappeared. There was debilitating fear.’: Girl with Down syndrome survives new heart surgery, ‘She’s one of the first to have it’

“I kept taking her picture, scared it could be the last one. I counted every eyelash, perfectly placed on her eyes. She would be the first on the West Coast to have this surgery. I didn’t want to let her go because then the decision would be final.”

‘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.”

‘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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