Meet Rylee

CDH Survivor
Congenital Diaphragmatic Hernia
CDH Support

RYLEE’S STORY

All CDH babies are strong, and Rylee Anne Caldarello is certainly no exeption. Since making her debut in November of 2020, she’s overcome the odds time and again. Enduring a dual diagnosis of a Giant Omphalocele and a Congenital Diaphragmatic Hernia, so many didn’t give her a chance but thanks to the faith and hope exhibited by her parents and great assistance from Dr. Kays and the medical team at All Children’s Hospital Johns Hopkins in St. Petersburg, Florida, she persists!

Rylee’s diagnoses came during ultrasounds at 20 and 23 weeks. Her parents, Lauren and Justin, were devastated but determined to give their daughter a fighting chance. Ultimately, they put their faith in Dr. David Kays and his medical team, relocating their family to St. Petersburg from Peachtree City, Georgia not long before Rylee’s due date. 

She came in with a bang, quite literally. On Thursday, November 14, when Lauren was making her way back to the Ronald McDonald House where she was staying, her car was hit on the interstate, sending her into labor. She was transported to a facility adjacent to Johns Hopkins where her CDH team rallied to give Rylee a warm welcome. Rylee was moved immediately from the O.R. to another room where she was stabilized with a breathing tube. Unfortunately, there was some difficulty getting her on ECMO, but Rylee took the wheel and held her own for 7 hours, something the team never anticipated. Finally, they got her on ECMO, and she remained on it for 15 days. 

The first 8 months of Rylee’s life were a battle. She struggled with extubation, eventually getting a trach to assist her in breathing. During her G-tube surgery her team discovered another hernia that her heart was falling through, they were thankfully able to address with minimal difficulty. After that, Rylee battled a bout of pneumonia but was finally able to leave the hospital “for good”.

After some deliberation–and one very scary incident at home that led her to return to the hospital–the Caldarello family decided to make their relocation to St. Petersburg a permanent one. “We went into the ER and everyone knew her. We didn’t have to explain anything,” Lauren recounted. “We knew we couldn’t leave. We couldn’t get care like that anywhere else.” 

These days, the Caldarello family is loving life by the beach and getting to know the community of St. Petersburg. Justin is working at a golf cart business and opening up a shop of his own. And Lauren is working hard to keep up with the fiery, spirited, super-smiley Rylee and her two big brothers. “If I could say anything to other CDH families it would be to never give up,” Lauren told us. “Always get a second, third, fourth, or even fifth opinion. You’re stronger than you think you are. These babies do what they want, and you need to be flexible.” 

  • As told to Fore Hadley by Lauren Caldarello aka “Mom”

About the Fore Hadley Angels in the NICU Fund

Support and proceeds for the Fore Hadley Angels in the NICU Fund will go towards assisting current and future families like Caleb’s, by providing financial contributions to assist families with the costs associated with extended, long distance travel and living arrangements. Costs that are often a must to ensure the proper specialty care for CDH babies.