Featured cherub of the week is CDH Survivor, Rebel Williams. Rebel is the daughter of Savana and Jamar Williams. They had this to share about their precious daughter:
“Like many other families, we found out Rebel had left-sided congenital diaphragmatic hernia (CDH) while I was 18 weeks pregnant. We immediately sought out help and came into contact with the CHERUBS organization. This resource put us into contact with other families and we soon became a part of the CHERUB’s circle. Rebel was born January 17, 2016 at Banner University in Phoenix, AZ. We knew the NICU was inevitable for us, as babies with this condition only have a 50/50 survival rate. Rebel’s hernia was on the left side and she had all of her stomach, most of the bowels and part of the liver in the area where the left lung is supposed to develop.
She had surgery when she was 4 days old to fix the hernia. Rebel did not need ECMO, but she was on a ventilator for 21 days and needed the added support of an oscillator for 10 of those days. She has an underdeveloped (but tenacious) left lung and her right lung has always been full-functioning. Despite the 50/50 odds, Rebel endured her fight and she came home without the need for oxygen or a feeding tube, which we had planned all pregnancy on needing. And in the face of being so sick her first 2 days of life, she only spent a little less than 2 months in the NICU.
Although we are deeply humbled and thankful for her progress and health, the fear that CDH causes families leaves deeply imbedded scars. That first day we truly felt that it was unforgivable for a condition to threaten the life of our child. We felt heartache and true pain. However, we are blessed to deliver a story of happiness and let other families know that CDH can be survived!
We don’t hold a grudge. Rebel’s fight with CDH gave us our story. It taught us ALL that true fortune is found in family, true happiness is found in the priceless, free moments of each day and that life is a treasure! Rebel’s scar provides her “Super-powers” that could only come from such a story. My husband and I strive to be “Super-enough” to be worthy of such a “Super-human”! Some might not understand this, but there are times that we do feel a sort of guilt for the unknown reasons our baby survived while others have gained their wings all too early. This reverence for those who have lost a child has cultured a sincere awareness. We are present in moments that might otherwise be brushed aside or forgotten. We hug a little tighter, bask in the warmth of a hand on our arm and if kisses provided protection, her armor could withstand any blow.
Our motto from Day 2 (Day 1 was too hard) is: “Whether we have 1 minute, 1 hour, 1 day or if in 30 years Rebel is still sleeping on our couch… we’ll take it! We’ll love her as much as we can for as long as we can. That’s our baby!” CDH did not break us. CDH does not define us. But… CDH is a part of our story. In a serendipitous adventure, CDH has made us better. CDH has made us mindful. CDH has made us humble. CDH has made us believe in miracles… and Rebel is our miracle!”
