Camden was born on March 6, 2015. Camden was delivered by cesarean section at 35-weeks due to his mother’s sudden and severe development of HELLP syndrome (Hemolysis, Elevated Liver enzymes and Low Platelets), a life-threatening complication of pregnancy. Camden was born small but mighty at 4lbs, 14oz, his well checks were all passed. When Camden began feeding, he immediately began vomiting, formula, yellow emesis, green bilious emesis and blood. Camden’s symptoms were dismissed by the newborn critical care team and it was only at his mother’s urging that further exploration of his symptoms were pursued. Hours later, it was reported that ‘something was wrong with Camden, ‘very wrong.’ No explanation was given. Camden’s mother pushed for Camden to be transferred to another hospital with a higher level of care where answers could be found that were desperately needed. Camden’s condition deteriorated at a rapid rate. Still under the care of the ICU, Camden’s mothers was wheeled to the hospital helicopter pad and it was suggested that she say goodbye to her son- she was given his knit newborn cap as a memento of the last moments with him.

Upon arrival at his destination, Camden was rushed into exploratory surgery and it was found that Camden had experienced volvulus as the result of intestinal malrotation, he was septic, his bowel was necrotic and his prognosis was poor. Camden survived this and three subsequent surgeries over the next 3-days, removing nearly all of his bowel, placing a central line Broviac catheter, gastrostomy tube and ostomy to attempt to rehabilitate his bowels over the upcoming months. No promises were made. Camden spent 3.5 months fighting in the NICU with his mother by his side, as she learned how to care for the complexities of his new diagnosis, Short Bowel Syndrome (SBS) a devastating outcome of intestinal malrotation and volvulus. During this stay in the NICU, Camden had many touch-and-go moments. After three and a half months in the NICU an attempt to reverse Camden’s ostomy was made that resulted in a failed surgery and once again put his life at risk. At this point, his mother had learned enough from the limited information available, that Camden needed a specialized team to support his care and give him a shot at life. Camden was med-flighted to a hospital miles away who offered a new promise in Camden’s story. Through this time Camden experienced sepsis, liver failure and multiple other complications. After another 7.5 months in the hospital setting, Camden was finally able to leave the hospital for the first time- sustained only by parenteral supplementation and the hope that tube-feeding could one-day be achieved. For another 3.5 years, Camden was in and out of the hospital multiple times to care for his central line.

Monthly trips were made out-of-state to have check-ups and gather experimental medication that ultimately saved Camden’s liver and life. All of this fight was done in near isolation aside from a small Facebook group that Camden’s mother had joined at the urging of a college friend, who had posted years prior that her daughter’s intestines had twisted because of a birth defect called intestinal malrotation. This was the only time that Camden’s mother had heard of the condition prior to Camden’s birth. The name of the condition and account was tucked away in the far bounds of her memory until one day, while desperately seeking answers, her memory was jarred and Camden’s mother reached out to her friend as a support. It was through this connection that Camden’s mother was able to network and find the care to keep Camden alive and thriving. Now, Camden is 8-years-old. He eats orally and is a kind, smart, funny and energetic little boy. He is filled with life. He will always live with short bowel syndrome and the complications that come along with the diagnosis, but everyday the dialogue surrounding him is ‘JOY.’

It was the acknowledgement that a friend’s story-share forged the connections that Camden’s mom needed to fight for Camden’s life, to connect with the few others whose narratives looked the same, that she new that a formalized organization needed to exist to draw community and attention to Intestinal Malrotation and the lives that it touches. It was concerning to Camden’s mother that the first reports of intestinal malrotation were based on accounts prior to 1900; yet no one had cared enough to champion the condition that nearly took her son’s life and left him without a large majority of his small bowel.