Emmett’s Story
O Warrior Stories
Written by: Laurie Grotzinger
When my husband and I found out we were pregnant with our second child, we were ecstatic. Up until about 20 weeks, we were experiencing a totally normal pregnancy. Since I’m of advanced maternal age at 38, I decided to have some prenatal genetic testing done, which all came back with no abnormalities, and informed us that we were having a boy!
When we had our 20 week ultrasound, we could tell something was wrong based on how long the ultrasound was taking as well as the technician’s demeanor. This is where we discovered there was an abdominal mass involving Emmett's liver. At the time, our OB could not specify what kind of mass this would be. Luckily we were able to get an appointment with a perinatal specialist and a more detailed ultrasound in about a week’s time, so we didn't have to wait too long for some answers.
At the perinatal appointment, we discovered that Emmett had a giant omphalocele mainly involving his liver with a small amount of small intestine. He was not found to have any other defects that can be associated with omphaloceles, including issues with his heart and lungs. We opted not to undergo any further genetic testing, given the results of my prior blood work essentially ruling out any fatal trisomies. We did meet with genetic counseling and opted to pursue further genetic testing after he was born.
Emmett decided he wanted to get out and meet the world a little early at 38 weeks and 1 day. He was delivered via urgent C section. He came out at a whopping 8 lbs 10oz and 21 inches. Thankfully, his respiratory status was good and he needed only a small amount of oxygen via nasal cannula. He was off all oxygen the next day.
On hospital day 1, Emmett was assessed by surgery. The plan was to start with daily dressing changes – the “paint and wait approach” - and see how his omphalocele progressed. He did initially have an OG tube to decompress his stomach and prevent him from potentially aspirating any fluids that would accumulate since his intestines were not yet moving. He had a PICC line placed and was started on total IV nutrition as well.
After a few days, Emmett was doing so great, they started by mouth feedings and removed his OG tube. His omphalocele membrane was thickening and starting to grow new skin around the edge. Since he was doing so well, surgery now plans to continue with the “paint and wait” approach with repair of his omphalocele around 6 months.
Emmett continued to make good progress and was working towards discharge with less than 2 weeks spent in the NICU. Unfortunately our plans were derailed by the development of fevers. He underwent an extensive workup including a lumbar puncture, CT imaging, multiple ultrasounds, blood cultures, and numerous labs. Eventually his fevers resolved with IV antibiotics, though no source of infection was ever found.
Emmett is now doing great. He recently had his closure surgery in November 2024!
Thank you for reading our story.
