Carmello's Story - Congenital Diaphragmatic Hernia (CDH)
On February 15, 2010 my husband and I lived changed forever. After giving birth to what we thought was a healthy 6.13oz baby boy we were told he had Left-Sided Congenital Diaphragmatic Hernia. We had absolutely no idea what that was, because like most parents affected by this defect we'd never heard of it. After trying to register what was being said to us they also said he'd be getting life-flighted to UF Health Gainesville within the hour. I was absolutely distraught. The team at UF Health Jacksonville where we delivered assured us that if we wanted him to survive his best chances was in Gainesville with Dr. Kays and his team who a 92% survival rate. So we went to the NICU to tell our baby boy goodbye and that we would be there tomorrow. He was born on my mother's birthday, so it was especially bittersweet for her.
I called every hour of the hour to make sure he was okay and he was he definitely was fighting. On February 16, 2010 I was discharged from the hospital and my husband and I, along with our families, drove to Gainesville, FL. On our way there we were called for permission to put him on ECMO the FIRST time. I told them to do what they had to do to save our son and they did. He did very well on ECMO and after 8 days he was taken off. On March 1, 2010 he was repaired, but little did we know this road was about to get bumpy all over again. After surgery he had a hard time. He couldn't remove the CO2 from his blood and was ultimately put back on ECMO on March 2nd. We were so scared thinking everything was supposed to be okay after surgery. It wasn't we prayed and prayed and 8 days later on March 10, 2010 he was removed from ECMO again. This was the best day ever as this was also our oldest son's 2nd birthday.
After this last time everything turned around! They weaned him from all medicines, he downgraded to just a nasal cannulas, we got to feed him, and we got to hold him for the first time!! We were told he'd probably never take a bottle and would probably need a feeding tube, but boy were they wrong! He took the bottle immediately! Then things turned again he had reflux, but it was a simple fix. So he went in for surgery on March 25, 2010 to have a Nissen and G-tube placed. The g-tube was for venting only as he took all feeds by mouth.
On April 15, 2010 he was sent home. Exactly 2 months after this all started! He went home with just a g-tube and oxygen and only kept both for 6 months before being removed. After being born with LCDH and having his intestines, bowel, and spleen up. After 2 ECMO runs, repair surgery, nissen and a g-tube done Carmello is now a 10 year old, 4th grader, and a straight A student. This is Carmello's story!