Sydni had a completely normal pregnancy but at her 20-week anatomy scan a concerning black mass was seen in her son’s abdomen. The doctors were unsure what this was and said to wait and run tests after birth. Nash was born at 35 weeks, with a distended abdomen but was otherwise healthy.
Nash passed meconium after birth and attempted to eat. Within 24 hours of birth, Nash began vomiting bright green bile and was unable to feed. His skin began turning bright yellow/green, making him look like a highlighter. The scans showed an intestinal duplication cyst that was thought to be no big deal. Surgery was scheduled for day 5 of life but Nash’s health began to decline and was found to have severe anemia with a hemoglobin of 3. When Nash went to the operating room, the surgeon was shocked to find that Nash had developed a midgut volvulus from intestinal malrotation. Nash had over 2/3rds of his small intestine and his ileocecal valve removed. While at Kentucky Children’s Hospital, Nash had life-saving surgery. Nash lost his ICV, the surgeon removed his appendix and connected the healthy small intestine to the large intestine through where the appendix was originally located. The hope was that this intervention would create a makeshift valve and help prevent ‘dumping syndrome.’ A gastrostomy tube(g-tube) was placed during this procedure as well. Nash returned to the NICU on TPN and Continuous tube feeding. We finally got to take Nash home after two and a half months on continuous g-tube feeding but we were able to wean off that by 5 months old and remove his gtube.
Nash has what is known as Short Bowel Syndrome (SBS). Nash has excelled above and beyond expectations and is now completely fed by mouth. He has dietary restrictions to help prevent diarrhea and stomach upset as well as issues with restroom urgency and vitamin deficiencies. However, with proper management Nash lives a normal life. He goes on trips, plays sports, loves trains, and plays with monster trucks. Living with Short Gut Syndrome has its own set of challenges due to it being an invisible disease but our goal is that by sharing Nash’s story we can raise awareness for our Short Gut Warrior and provide hope to families going through a similar situation. Nash has taught us the importance of being kind and understanding to others because not all disabilities are able to be seen.