Living With NEC: A Survivor’s Experience

The NEC Society is honored to share the stories of people impacted by necrotizing enterocolitis. This is Lakevia’s story.

My name is Lakevia Ward and I was born in 1988 in Tennessee. After I was born, the doctors noticed something was wrong and I was sent to a children’s hospital to be evaluated. After many tests, my mother was told that I had necrotizing enterocolitis (NEC). She didn’t understand what was going on because she had never heard of NEC before. They explained to her that it was uncommon for full-term babies (like myself) to develop NEC, and they had no clue as to why I developed this terrifying disease.

They told my mother that I had a 50/50 chance of survival. I might not survive surgery, but without it I would surely die. Shortly after being diagnosed with NEC, I had surgery to remove 90 percent of my large intestine!

lakevia-1aAt five months old, I had another extensive surgery to reconnect my bowels. I was finally able to go home when I was about seven months old. The doctors told my mother that I would be a normal child and that I wouldn’t have any future complications from NEC. Today, I suffer from severe abdominal/pelvic adhesions (my abdominal organs are adhered together/to the abdominal wall), spinal issues, and pelvic masses. I had abdominal surgery in 2011 and I have visual problems as well, possibly from a vitamin deficiency related to NEC and my surgeries during infancy.

Since becoming involved in the NEC Society, I have learned a lot about this devastating disease. In 2019, I had the opportunity to participate in the NEC Symposium at the University of Michigan in Ann Arbor, MI. Being part of the NEC conference was amazing! I didn’t know what to expect and I was very nervous, but everyone was so warm and welcoming. They let me know that I belong, and that my voice and experiences are valuable. I’ll never forget how they made me feel! One thing I’d like everyone to better understand is that NEC for sure has long-term complications. My current health issues are the result of the very surgery that saved my life decades ago!

I am learning more about NEC all the time, and the NEC Society has been such a helpful resource. I care deeply about raising awareness about NEC and I want to help educate others as well as myself! I believe if more people are educated and aware of NEC, we can better prevent it. By catching and diagnosing NEC earlier, I’m hoping it will be more treatable. Making that kind of progress may sound impossible right now, but I know the NEC Society’s community can do it by working together, I truly believe that!

You can join our movement to #preventNEC by following us on social media, subscribing to our email list, and making a donation.

You can also read more stories from families impacted by NEC on our NEC Stories page.

Do you have a story you want to share? Tell us here.

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