Written by Linseigh Green, NEC Survivor
Why couldn’t I have been born with a more romantic disease? Not that diseases are romantic, but of all the medical conditions, particularly those with long term effects, why was I stuck with the one that affected my digestive system? The one whose symptoms can only be described with euphemisms in polite company? I am a survivor of Necrotizing Enterocolitis (NEC).
On August 13, 1997, my parents’ newborn wasn’t placed in their arms with a congratulatory flourish. Instead, they received news that I couldn’t hold enough glucose. Then, they were told that I was showing signs of cardiovascular complications. After that, my parents were hit with one problem after the other, until days later I was diagnosed with NEC.
My parents had no idea what they were dealing with, and educating themselves about this terrifying, fatal disease was a difficult task when they were already overwhelmed with fear and grief. I was not a preemie, but I did have an unusually low birth weight. The doctor explained that the problem could possibly be resolved after a week of feeding me intravenously, but when I tried to consume food orally, I would vomit, unable to digest edibles or pass stool. When I was one-month-old, an x-ray revealed a constriction in my colon, and I was sent to the Children’s Hospital for surgery. Part of my intestine was removed, and I received a colostomy bag. When I was three-months-old, I returned for another surgery, where I was “put back together.”
I had a relatively normal childhood. I was always aware of my medical past, and my parents were always open to answering my questions, even when I discovered a photo album with my infant self in a colostomy bag. As a small child, I always looked curiously at the scar that ran across my abdomen. I was never ashamed of the long, dark line—in fact, I was rather proud of it. I thought it made me special, a chosen one destined for greatness, like Harry Potter!
But some of my NEC-related souvenirs weren’t so easy to make light of. Some mornings, before school, I’d tell my mother that my “scar hurt.” I’d throw myself onto the bed, curling into a ball and shutting my eyes to block out the pain. There were other things that were difficult to comprehend, such as my inability to eat more than small amounts of food at a time without getting sick.
When I was 16-years-old, I sang at a recital, despite a day of increasing abdominal pain. As soon as I’d finished my performance, I went straight to the ER. By then, I was in so much pain that I was shaking uncontrollably. After performing a CAT scan, the doctor confirmed that I had scar tissue, and that my intestines were inflamed. They also mentioned something that we had never thought possible: I was suffering from long term effects of NEC.
After that incident, I was in the hospital annually. I had some rather frustrating experiences, as many providers had never even heard of NEC, and some clinicians refused to believe that I could still be affected by something that I had when I was a baby.
In 2015, I began my freshman year at New York University, where I am currently studying Society and Storytelling as a junior. Right after my 18th birthday—my second week of college—I was hospitalized for yet another bout of abdominal pain. I woke up to find myself surrounded by a surgeon and his clipboard-wielding students. He gushed about how excited he was to finally get to work with a teenage NEC survivor, and was genuinely disappointed when a gastroenterologist confirmed that he would not get to operate on me for his class.
NEC did leave me with something that my family has always viewed as a miracle: my voice teacher’s cousin was married to Dr. Bleacher, who’d operated on me as an infant. By the time we discovered our connection, I’d already been singing with his daughter for years. Dr. Bleacher watched me sing arias and perform in musicals, and even attended my graduation party—he was able to witness who I’d become, because he’d rescued me.
I realize I am fortunate to have survived NEC and do not take that for granted. I am grateful for the opportunity to become someone and have a positive impact on families just like mine.