Baylee’s CDH Story
When I went for my 20-week anatomy scan, we learned that Baylee had Congenital Diaphragmatic Hernia (CDH). Like most people, we had never even heard of this. The doctors back home barely gave us any hope at all. Fortunately, after much research, we came across one of the leading experts in CDH treatment, Dr. David Kays, at Johns Hopkins All Children’s Hospital. After meeting with Dr. Kays, we learned Baylee was an extremely severe left-sided CDH case with an ASD, VSD, and a significant genetic disorder. The fetal MRI showed the spleen, bowel, stomach, and liver were in her chest. Dr. Kays had prepared us for Baylee to be hospitalized for at least 4-6 months and that she would go straight on ECMO after being born because of how dangerously low her lung volume was. To say we were scared and heartbroken is an understatement.
On July 18, 2022, Baylee came out ready to fight (hints why the nurses called her feisty). She weighed 4.4 pounds and decided to breathe on her own for almost two days, and then, as Dr. Kays said, she “ran out of gas,” and they proceeded to put her on ECMO. Her repair surgery was completed the following day, and we learned that she was missing 85% of her diaphragm. Baylee was on ECMO for 21 days, hospitalized for 66 days, and she got sent home on 0.5 liters of oxygen! She definitely had her good and bad days, but I always said, “We are on her time & she can take all the time she needs.” The VSD ended up closing on its own while she was hospitalized, but the ASD remained the same. So, when we were discharged, we were told to follow up with our cardiologist back home, and we would go from there with her open heart surgery to fix the ASD. After going to cardiology at home every 4-6 weeks for echocardiograms and X-rays, we discovered that the hole in her heart needed to be closed sooner than later. So four months after she was discharged, we went back down to St. Pete for her to have her open heart surgery. There again, she showed us that nothing could stop her, and she healed up very quickly. When she was admitted, she was on oxygen, and 7 DAYS AFTER her surgery, we were discharged, and she was sent home off oxygen!
Since then, Baylee has been living it up at home with her brother, getting stronger by the day and thriving! She is still very small, but that does not stop her from doing anything! She actually was in the negative percentile for growth when she was born, but now we have made it out of the negatives! Baylee is now a year old and is the sweetest, most independent baby ever. This journey was not easy at all, but these babies are so strong and worth every bit of it. We are extremely grateful to everyone who helped us during this journey. We will never be able to come up with enough words to thank Baylee’s lifesaver, Dr. Kays, and all of the CDH and ICU unit staff. Also, we are extremely thankful for the help and hope we received from Tiny Hero and the Tiny Hero community.
