Twelve Coca-Cola cans a night. That’s how much caffeine it would take for one mom to stay awake throughout the night for months on end so that her baby wouldn’t die while she slept. If by chance she falls asleep at night, the baby in her womb dies. She successfully stayed awake all night till her baby arrived but not without a condition.
Back in 2009, Marne Harvich-Chergi was blessed with the birth of her baby girl, Cassidy. However,
that blessing soon turned into a challenge for the new mom: Cassidy suffered from a very rare disorder known as congenital central hypoventilation syndrome, or CCHS. She was one of the 1,200 reported cases worldwide, according to the non-profit, CCHS Family Network.
“I did everything right and she was wanted so bad,” Marne said. “I don’t know how this happened to us. How did we get some rare genetic mutation that no one’s ever heard of?”
CCHS is a disorder that affects one’s breathing. To put it simply, Cassidy’s brain doesn’t tell her to breathe on her own.
“A nurse told us it’s like we’re dancing with death,” Marne said. “She turns blue, her entire body goes stiff, she doesn’t breathe, her eyes roll back in her head.”
In addition to the 12 Coke cans and nearing sleep deprivation, Marne also hooked Cassidy up to a machine to assist with her breathing.
“I honestly didn’t think she’d live another week,” Marne said.
Fast forward to 2017. Cassidy is now 7 years old, living as close as she can to a normal life, Marne said. Cognitive tests also show Cassidy is two-to-four years above her age. When asked if she thought she’d ever get to this point, Marne said “no.” “Every day I woke up and I’d call my mom and say, ok, today is the day she is going to die.” Cassidy is now old enough where she can understand her condition and even connects the ventilator herself.
Cassidy does have some speech issues because of oxygen deprivation, but that doesn’t stop her from doing one of her favorite pass-times: singing. But even while she sings, Marne will still have to remind her to “take a breath.”
Despite this, CCHS still makes Cassidy’s life fragile.
“Every night I put her to bed, I know there’s a chance she won’t be there in the morning,” Marne said.
Because CCHS is so rare, there isn’t enough research or support for families who have someone who suffers from the disorder. Marne hopes Cassidy’s story will help bring awareness to the community and encourage folks to support and fund future research to understand CCHS better.