facial deformities

‘She wasn’t getting enough air. She was almost gasping and was quite purple. It was pure torture.’: Woman gives birth to baby girl with Treacher Collins Syndrome, ‘Her disability won’t hold her down’

“I noticed her ear looked small, but I chalked it up to the typical squishiness of a newborn. ‘So what? What is the point of showing me her differences?’ She has underdeveloped ears, cheekbones, and jaw that make her appear a little different than most of us. I just stared at her in awe, with nothing but love and admiration.”

‘Why isn’t anyone congratulating me? Sadly, my daughter’s arrival wasn’t celebrated.’: Woman gives birth to baby with Treacher Collins Syndrome, ‘our normal is different but I wouldn’t change it for anything’

“I was excited and ready to meet our baby girl! I realized something was not right. I said, ‘What is happening?’ Why is my husband so confused and scared? Why can’t my mom look at me? Why did my doctor step out? No one said a word. The silence tore me apart. I finally got a glimpse of Bella and… she looked ‘different.’”

‘My daughter took her final breath. I felt a sudden surge of energy rush into my body. I carried her downstairs to the gurney.’: Grieving father recalls ‘hardest thing’ he’s ever done, ‘Sophia needed her Daddy one last time’

“When the funeral coordinator arrived, I gently picked Sophia up one last time. I carried her down the stairs to the gurney waiting for her. I made sure she was carefully secure as she was loaded into the van to the funeral home. I was lucky to be her daddy. I still have not grieved from watching my beautiful sweet girl die. I write her name in the shower on the glass with a big heart every day. It’s my way of remembering her.”

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