Charleigh’s Story
O Warrior Stories
Written by: Katie Gatewood
Hi there! My name is Katie Gatewood, and I’m the mom of three sweet girls: Kambria (6), Charleigh (3), and Khloe (2). Our sweet O baby is Charleigh Rae. Charleigh is both a medical mystery and a miracle. She’s not supposed to be here, and she wasn’t expected to survive many of the challenges she’s faced. Her diagnosis is a rare, sporadic congenital disorder—so rare that she’s one in a million births.
Charleigh was diagnosed in utero with an omphalocele and two heart defects. The day before she was born, I found out I had severe, sudden-onset preeclampsia—and, oh, I was also COVID positive. When Charleigh arrived at 30 weeks and 6 days, her omphalocele had ruptured, and she was immediately rushed into emergency surgery. I didn’t get to see her in person, only through pictures and FaceTime. She was diagnosed with Pentalogy of Cantrell, which involves five midline defects. In Charleigh’s case, this included the omphalocele, a diaphragmatic hernia (a hole in her diaphragm), a missing xiphoid process, a short sternum (with missing ribs), and four heart defects—this last diagnosis added another condition called Tetralogy of Fallot.
For the first six months of her life, Charleigh focused on growing new skin over her belly. Because she was premature and her organs developed on top of her lungs, she eventually needed a tracheostomy and a ventilator halfway through her recovery. She was at Mott Children’s Hospital, which is about an hour and a half away from home. We made that drive every day. In June 2022, we finally received a discharge date and were ready to bring her home. But then things took an unexpected turn, and Charleigh had to undergo emergency surgery to repair her heart defects.
July 7, 2022, was one of the hardest days of my life. At the time, I was three months pregnant with Khloe, and Charleigh’s surgery, which was supposed to last six hours, turned into 13. She faced multiple complications, including something called compartment syndrome. They had to reopen her body from chin to pelvis, re-exposing her organs. They couldn’t close her sternum, and she had three perforations in her bowels. Charleigh was placed on ECMO (Extracorporeal Membrane Oxygenation) and CRRT (Continuous Renal Replacement Therapy) for a week. The doctors told us she probably wouldn’t survive. But guess what? She did. Not without many more challenges, though.
Because of the perforations, Charleigh ended up with an ostomy bag, and other complications followed. Our sweet girl spent 511 days in the hospital, with a brief 2.5-week break at Sparrow. On May 9, 2023, she finally came home and has been growing and thriving ever since. She’s doing great, and her doctors are amazed by her progress. With the support of our family, friends, and nurses, we’ve been able to care for her at home. Of course, Charleigh loves to keep things interesting, and we’ve had a few hospital visits since her return. One of the most difficult visits came while Charleigh was at Mott with my mom by her side. My husband and I were at home, adjusting things for Charleigh’s return and taking care of our other two daughters. One morning, Gary went hunting, and there was an accident. He passed away unexpectedly, leaving me and the three girls without our greatest rock and support.
During this challenging time, Charleigh had outgrown her crib, and it became difficult to ensure her safety. I worked with our insurance company to secure a new bed for Charleigh, and we received the funding needed to purchase a Cubby Bed. These beds are designed for medically complex children to ensure they are safe and secure. The Cubby Bed has been an incredible help for Charleigh.
For now, Charleigh is stable and thriving, though we still have a major belly repair surgery to face in the coming months. She is the strongest person I know, and she inspires me every day. We’ve been through so much as a family, and I have no idea what the future holds. But for now, Charleigh will continue to grow, play, and share her spunky attitude and contagious smile with her family and community. She is on the move and walking now! Truly a miracle. She is our warrior princess.
