The NEC Society is honored to share stories of people impacted by NEC- this is Lakevia’s story.
My name is Lakevia Ward and I’m 28 years old. I was born on February 10th, 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 having tests done that first day, 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 of 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. On February 12th, 1988, I had surgery to remove 90 percent of my large intestine!
At 5 months old I had another extensive surgery to reconnect my bowels and was able to go home when I was about 7 months old. The doctors told my mother I would be a normal child and that I wouldn’t have any future complications. Today, I suffer from SEVERE abdominal/pelvic adhesions (my abdominal organs are adhered together/to the abdominal wall), spinal issues, pelvic masses, etc. I had abdominal surgery in 2011 and I have visual problems, very possibly from a vitamin deficiency related to my surgeries.
I don’t know much about this devastating disease but I know for sure that it has long-term complications. My current health issues are result of the very surgery that saved my life 28 years ago!
I am learning more about NEC all the time, and the NEC Society website has been a good resource. I care deeply about NEC and want to be able to educate others as well as myself! I believe if more people are educated and aware of NEC, it CAN be caught in the early stages. My hope is that if doctors and surgeons are able to diagnose NEC earlier, it would be more treatable. Making that kind of progress may sound impossible to a lot of people but it is possible, I truly believe that!
You can read more stories of babies and families impacted by NEC on our NEC Stories page.