From surviving NEC to propelling the NEC Society

Written by Linseigh Green, Outreach Manager for the NEC Society

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 necrotizing enterocolitis (NEC).

My parents had no idea what they were dealing with, and learning about this terrifying, often 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 they fed me milk, I would vomit.

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: my inability to eat more than small amounts of food at a time without getting sick; my horrific gross motor skills; my snail-like pace at school.

When I was 16, I sang at a recital, despite a day of increasing abdominal pain. I went straight from the stage 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 complications 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. 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. I’d been pickled in formaldehyde.

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’ve also been left with a story to tell. My Creative Writing Masters program at the University of Cambridge is teaching me how to use narrative as a path to empowerment in the midst of trauma and delegitimization, and I’ve learned that disclosure can potentially help others in my position.

Grateful as we are to be here, the NEC community should identify ways to better validate survivors’ experiences and concerns. Too often, NEC survivors are dismissed as irrelevant and overlooked. Entire GI departments have refused to see me. It took moving to the UK to find a specialist who was willing to give me an appointment. I’ve been accused of covering up poor life choices and have often been denied urgent care in potentially life-threatening circumstances unless I went along with my healthcare team’s accusations of substance abuse, pregnancy, or an unhealthy diet. As a student with a disability, I was unable to access accommodations in undergrad, because I didn’t have a physician who could vouch for me—I didn’t even have a name for the condition, because I am living with something that has no label. That left me vulnerable to penalties for sick days, shaming and humiliation by instructors, and so much more.

Through the NEC Society, it has been an honor and privilege to address the neglect of NEC survivors, and I am thrilled about the research project on long-term outcomes. But I am studying to become a creative. As a patient and young adult, it is not my responsibility to remind necrotizing enterocolitis experts that people like me exist, but by sharing my story I can help propel research, awareness, and improved support for NEC survivors. As we get better at treating NEC, we are going to end up with more patients like me who are forgotten unless we do something about it.

Elevate patient voices. Partner with NEC survivors. The quality of our futures are worth fighting for.

You can stay connected with the NEC Society by clicking here and you can help the NEC Society advance NEC research, education, and advocacy by clicking here.

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