Rylee’s Story - Congenital Diaphragmatic Hernia
My name is Samantha, my fiancé's name is Mark, and we are the parents of our wonderful daughter, Rylee. Rylee was born on March 7, 2022, at West Penn Hospital in Pittsburgh, PA. We were diagnosed at our 20-week anatomy scan. I remember the doctors telling me to terminate and I told them I didn't believe in termination. They explained what Congenital Diaphragmatic Hernia was and our hearts dropped to our stomachs. I was crying for days at a time, calling off work. After Rylee was born, maybe about 30-40 minutes later, she was transferred to UPMC Children's Hospital of Pittsburgh.
Once she arrived, they did a bunch of tests and wanted to wait and see if she would need ECMO. After 2 hours of waiting, she ended up requiring it. Her stomach, 40% of her liver, intestines, and bowel were in her chest, smashing her lungs and pushing her heart to the right side. Seeing her hooked up to all those machines for the first time broke my heart. I would cry every night, praying to God that he would heal her. After about a week of being there, they started clamp trials on the ECMO machine, but her blood pressure kept going down. They did the clamp trials about four more times. After the 4th time, I told them to stop because I felt like it was hurting her more than it was helping her. I told them to consult with Dr. Kays down at JHACH in Florida. He was willing to come and get her ASAP. Three days later, they came and got her on a med jet.
My mom, Lynne, and I drove down on the 24th, the same day they came to get her. They took good care of Rylee. I would not recommend any other hospital besides Johns Hopkins All Children’s Hospital to every CDH family. They literally saved her life and we cannot thank the team enough for what they did. She was hospitalized in Pittsburgh from March 7 to 24 and in Florida from March 24 to June 13. We came home on June 25.
Now that we are home, she gets OT and early development therapy. She also sees a neurologist, cardiologist, and GI doctor. There are a lot of appointments but it is worth it all. We will go back to Florida once a year for a yearly checkup. All of you CDH parents got this! Just have faith that things will get better and, if you believe in God, pray every day and night. That is who I turned to when things got challenging. CDH babies are so strong and so are you!
