Mason James’s Story
O Warrior Stories
Written by: Rachel Howay
Our story, although not the typical pregnancy story, brought us the most precious little boy Mason James! It all started with our very first pregnancy appointment. We had a “miscarriage scare” at 7 weeks pregnant. My husband and I were mentally preparing for the worst going into the appointment. We were diagnosed with a subchorianic hemorrhage at that point and were told the hemorrhage would resolve on its own with pelvic rest. The best news out of the appointment was the diagnosis would not affect the baby! This was the greatest news we could have heard!
We carried on with our pregnancy and by the 20 week mark we were so excited to hear the sex of the baby! Walking into the ultrasound we were giddy, ready to share the news to everyone we were close with once the appointment was over! However, when the ultrasound was complete, we knew there was something wrong. The ultrasound tech did not disclose information but her face said it all. The long wait for the doctor felt like an eternity to tell us the news of the ultrasound. The doctor explained to us that Mason had what was called a giant omphalocele, a potential heart defect and a 2 vessel umbilical cord (supposed to be 3 vessel). With these combined diagnoses we were told that the outcome is poor and most of the time the baby has genetic issues as well. Trisomy 13, 18 and Down Syndrome are most commonly linked to omphaloceles. We were told babies with Trisomy 13 and 18 have a low chance of living past birth. The hospital referred us to a specialist to get an advanced ultrasound that same week. We went home that day feeling so defeated and ultimately had so much fear of the unknown. The amount of research we did that night was too much for our own good, however with that research, we found the omphalocele support page. After hours of reading posts from this page, it gave us what the medical team didn’t at that time, hope! Hearing all of the success stories from these strong babies was everything we needed in that moment. The next step for us at that point was an amniocentesis and further work up with a fetal concerns center. We wrapped our head around the idea that Mason would have medical issues at birth and we mentally prepared for every scenario. We were ready to do whatever we possibly could for our little guy! With frequent appointments at the fetal concerns department we knew we were in good hands at Childrens Hospital of Wisconsin and knew our son would get the proper medical care from a very experienced team. Later that week we found out our amniocentesis results were negative for any genetic issues.
Our little Mason liked throwing us many curve balls during this pregnancy, the next curve ball being at the 26 week routine ultrasound. This routine ultrasound turned into a hospital visit! The doctor told us based on the ultrasound I was 1 cm dilated and had to stay the night at the hospital to make sure I was not in active labor. The overnight stay determined that I was not in active labor but needed to be on complete lifting and activity restrictions for the rest of my pregnancy. Mason decided that he would hold off until 2:30AM at 33 weeks gestation. At this point I had contractions every couple of minutes and my husband rushed me to the hospital. From then on it was a blur, from being told it was potentially Braxton Hix contractions to them checking me and concluding I was indeed in active labor. Next thing I knew I was being whisked away to the operating room for an emergency c-section.
Mason James was born at 6:45AM on October 1, 2023. He was 4lbs 2oz and born with a giant omphalocele containing liver and bowel. Mason had started the chip clip method which was a little too aggressive of an approach for him and he backtracked on his respiratory status. We spent 4 long months in the NICU. Nothing can truly describe what the day to day NICU life is like until you truly live it yourself. We are so proud of our little guy, looking back on the list of hurdles he went through during his first 4 months of his life is something that some won’t even experience in a lifetime. He fought life threatening necrotizing enterocolitis, had a UTI, bilateral hernia repair surgery, 29 NG tubes placed, 27 x-rays, 3 ECHOS, was on a breathing tube, had steroid treatment to get him off the vent, discovered a milk protein allergy, 2 viral infection work ups, countless lab pokes and IVs, the list goes on. We have a long road ahead of us, hoping to have surgery in July 2024 on his omphalocele, with potentially 2-4 more surgeries to finally close his belly. Currently working on getting him off of oxygen as well. Every day still brings its own challenges and curve balls but we will continue to take it day by day and ride out this rollercoaster of a journey. Mason has truly amazed us and is a fighter! We picked the name Mason because in medieval times they referred to warriors and knights as “Mason”. We discovered the omphalocele support page during my pregnancy and thought it was more than fitting to name him “Mason” as one of the many O warriors.
