‘Jack was screaming for over 10 hours, no tears. ‘Did you forget how to hold a baby?’ The nurse took him out of my arms.’: Mom advocates for son with rare epilepsy after multiple misdiagnoses

“A tight smile on my face and a pang in my heart, I joked along, but something felt off. His painful cries stopped, and his little body became rigid with eyes that would no longer focus. I was done trying to not be the overly sensitive mom – it was time to sound some alarms. After only knowing our son for 5 short days, he was taken away on a helicopter in critical condition.”

‘I’m sorry, she is non-viable.’ Daddy held her so very close, tears in his eyes. He knew it was time. She gave us 60 minutes in pure heaven.’: Mom loses newborn to Bilateral MCDK, ‘She taught us nothing but pure love’

“I remember the drive to the hospital, telling Jose I wasn’t ready, that I couldn’t do this, and just crying. He grabbed my hand and told me, ‘Baby, no matter what happens today, no matter how long or short her life is, she will know if nothing else LOVE.’ Scared and shaking, I received her on my chest. Our 60 minutes in heaven started.”

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