Sevyn’s Story

O Warrior Stories

Written by: Trinity Blanchard

Sevyn was born December 8, 2022. We found out about his Giant Omphalocele diagnosis 16 weeks along in pregnancy. You often hear about trisomys, heart defects, etc. but we’d never heard of about an omphalocele. We were referred to maternal fetal medicine who knew immediately they wouldn’t be able to handle his care here in Louisiana as there are no level 4 NICUs. We were advised to terminate, but we knew we couldn’t give up that easy. In the following weeks after deciding against termination, we had another appointment where they said they would be sending us to Texas Children’s Hospital in Houston, Texas. We had our first ultrasound there at 22 weeks then went into a board room meeting to discuss what they’d seen with numerous doctors. They told us Sevyn would more than likely not make it to birth as his heart was shifting there was ALOT of ascites and very low lung capacity. At this appointment, we’d also been told he had an ASD, a clubbed right foot and was missing his right hand. We were heart broken. Later that day, we met with our pediatric surgeon after he’d had a chance to review his charts and what was discussed with the medical team. Everything he told us was very reassuring and contrary to what the other doctors said as he’s dealt with many omphalocele babies. Every every appointment was a roller coaster of emotions in the following days as there were great appointments and some were discouraging. We relocated to Houston December 7th to complete our last appointment before birth. The next morning, Sevyn was born via c section at 8:40 AM. The hospital already had the NICU & others on standby as we knew there could be complications. He came out screaming then the room went quiet. Nurses began scrambling, calling out instruments, then everything settled. He was intubated. Contrary to the ultrasound, Sevyn did have a right hand although it was clubbed and he was missing a finger, and, his right foot was completely normal. Everything was smoothe sailing until it wasn’t. He self extubated on December 24th and was put on CPAP. He was doing so good they gave us an estimated Discharge date of February. He made it all the way to CPAP of 6 before having to be reintubated due to respiratory distress. He would go back & forth between intubation and CPAP 6 times before I did research and requested a bronchoscopy. The bronchoscopy revealed he had bronchomalacia. We’d be advised to give him a tracheostomy but we decided to explore other hospitals that could’ve done reconstruction surgery. Right before we got our approval for transfer, while visiting home in Louisiana, I received a call saying Sevyn was sick and things were going downhill fast. They told us we should come as they didn’t know how things were going to end. We arrived and things declined even quicker. Cultures and panels were being ran but they needed to keep him comfortable until they knew what exactly it was to have a course of action. The following morning, he tested positive for rhinovirus and went into a pulmonary hypertension crisis. Sevyn’s saturations were stuck in the 70s and his blood pressure began decreasing. They were bagging him doing all they could to save him. They tried the oscillator and his saturations dropped lower. Finally, they decided to put him on ECMO as it was the last resort. Once he was put on ECMO, his saturations immediately went to 100%. He was on ECMO for 14 days before he was able to come off.

After coming off ECMO, we knew his lungs had taken a hard hit so he wasn’t stable enough for transfer. We opted for the tracheostomy and he immediately began to thrive. He began eating by mouth, better oxygenating, and just all around doing things he couldn’t while intubated. After 8 long months, we were discharged home August 22, 2023. We have since then been compressing our omphalocele at home in preparation of closure surgery at 18 months. His ASD has closed on its own and also his hypertension issue has resolved. He should also be off his ventilator by the Summer. Omphalocele babies are the epitome of Warriors. Never lose hope.