Jerry’s CDH Story

Jerry Duncan (also known as Jerr-Bear or JD) was born on February 17, 2023, with left-sided Congenital Diaphragmatic Hernia (CDH) at Children’s Memorial Hermann in Houston. At birth, his CDH was so bad that he had everything up except for his liver. All the testing and imaging during pregnancy only showed the stomach and part of his spleen up, so we were surprised when, at less than 24 hours of life, JD needed to be put on ECMO. However, within less than 24 hours of being on ECMO, his intracranial hemorrhage worsened, and JD had to be taken off of ECMO. His doctor was convinced that JD would not make it due to his worsening condition. We were also told JD had clinical seizures. He was placed on monitoring and treated with numerous antiepileptics. During that time, we had lots of scary conversations about how “IF” he were to survive, there would be delays. After his CDH repair surgery, he caught E. coli, causing him to be placed on an oscillator (as ECMO was no longer an option), nitric oxide, and a plethora of medications. He spent a total of 61 days in NICU, making lots of girlfriends, fighting, and progressing. He was home for 2-3 weeks before he started throwing up, for which he was rehospitalized and underwent a second CDH repair. We were lucky that it was just a short stay. Another month later, after he was in diapers, he was rehospitalized again. This time, he needed three different surgeries: an ostomy for 4-6 weeks before undergoing an unsuccessful surgery to reconnect his bowels, and finally, a third surgery to cut more intestine away and treat a bowel obstruction. He spent over 150 days on the pediatric surgery general floor, making even more girlfriends. After that, we had a few PICU trips, including a bad scare resulting in chest compressions and a 24-hour PICU stay. He then had a third rehospitalization with an easy fix and short stay, but since Thanksgiving, JD has been home safe and THRIVING! He is currently on TPN for 12 hours a day with a central line in his chest as well as a G-tube. He is a true miracle!! He is very active and goofy, finally cleared by neurologists to be OFF of the seizure medications and daily shots he was on to help clear the blood clots he also had in his brain. He is talking, jumping and rocking, rolling, crawling, pulling himself up, sitting up, and trying to stand up - all the normal baby things. We are about to celebrate his ONE-YEAR BIRTHDAY! #thereishopeforCDH #MYTinyHero