A NICU Story (part 2)

Breath In, Breath Out.

After finding out that Everly had CHARGE Syndrome I did what any person would do. I googled the crap out of “What is CHARGE Syndrome?” Essentially, it’s having specific medical anomalies. Each letter of CHARGE stands for something and you can be diagnosed either clinically or genetically. In Everly’s case it was genetic and she has letters C,H,A and E. She has a Coloboma in her left eye, she was born with Heart defects, Atresia choanae and Ear abnormalities and she also has the malacia, which would keep her on oxygen until she was 16 months.

The list of diagnosis were daunting and the statistic were scary with a only 70% surviving to five years old and the highest death rates are in the first year of life. I had no idea if she would survive. Burdened now by these statistic I’d keep them to myself…

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