trach baby

‘DING DING DING.’ His heart rate dropped. All of the tests were negative. He was known as the ‘mystery baby.’: Woman births baby with Congenital Central Hypoventilation Syndrome, ‘Our lives would never be the same’

“The doctor laid him on my chest and instant panic came over my face. He was a shade of blue. I had done this five times before. I knew what a newborn should look like. He began to throw up and for a newborn, it was a lot! Why was this happening?”

‘I swallowed my own tongue and went blue. One week into school, the bullying began. ‘Why should I be moved and not them?’: Teen with Treacher Collins Syndrome urges ‘we are all unique and amazing in every way’

“I was born with no ears, no cheekbones, and a receding jaw. Food and bottles were thrown at me. It got to the point where they would trip me and pin me up against walls. I used to come home from school every day crying, but still the school did nothing. Instead, they moved me to another class. ‘Why should I be moved and not them?’ The bullies took over my life.”

‘You’re lucky he didn’t die in his sleep. He is 1 in 6 billion and will be bedridden for life.’ I clenched my husband’s hand in disbelief, tears welling in my eyes.’: Mom praises medically complex son, ‘He is our little heart warrior’

“He was lifeless and pale. The clock was ticking. All we could do was pray and hold his little hand. Sitting beside his hospital bed, 3 genetic doctors in white coats rushed in. ‘Can we go to a private room to talk?’ I walked down the hallway in a fog. ‘We were wrong. It’s severe. He will never live independently on his own.’ Soon after, he had a stroke and began seizing up. This was the worst-case scenario. It was really happening.”

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