My Nonprofit Reviews

A few years ago 3 little boys were beyond excited to welcome a little sister! "Our FIRST sister!" they happily exclaimed to anyone who'd listen. The day finally arrived and they anxiously awaited pictures of their "finally a girl". She was born a robust 8.6 lbs and 21" long, yet, layed on my belly
purple,
still,
SILENT.
The silence was suffocating.
I was frozen with terror and could only repeat, "She isn't crying. She isn't crying." Thankfully nurses were able to get her responding. We knew something was off, but the nurse blew off all of our expressed concerns. We went home KNOWING something was wrong. A mere 13 days later we landed in the ER with our first baby girl in desperate trouble. Her oxygen had been at 80% for the first 13 days of her life, we'd found her not breathing several times each night, and she turned purple every time she cried. We heard the words Congenital Diaphragmatic Hernia for the first time in our lives. Words like she's stable at the moment, and emergency surgery were being flung at us faster than we could process.
It was harrowing!!
We were stunned to numbness, yet, wildly terrified all at once. We had no idea the long term implications to such a diagnosis. We were later discharged with NO warnings or long term information regarding a Diaphragmatic Hernia survivor. We muddled along for nearly 2 years with NO idea what was typical versus cause for concern.
We were alone.
It was a terrible way to try and provide what your baby needs. Then, one day, I stumbled across CHERUBS and found an entire community navigating the same path we were on. We were no longer alone. We had hope. We found wisdom. We found support from those who really get it. We found a second home! We're forever grateful for this amazing group of dedicated people.