Elaine and Chris Jones lost their beautiful daughter, Caitlyn Grace Jones, to NEC on April 16, 2006.
This website was created as support network for parents like us, where both stories and up-to-date research can be shared regarding NEC (Necrotizing Enterocolitis).
On Wednesday night, April 4, 2006, my husband and I went to the nearest hospital in an emergency. I didn’t feel well and knew danger was ahead. Within minutes I was diagnosed with pre-eclampsia coupled with HELLP Syndrome. At 28 weeks pregnant, we were told we were having our baby that night.
Caitlyn Grace was born at 3:08 a.m. on April 5, 2006 weighing 1lb, 13oz. She was beautiful! Caitlyn went straight to NICU, where the best nurses and doctors could care for her. Caitlyn was doing great and was building up on her feeds at a good rate.
Then, on Saturday, April 15th, we received a phone call. Caitlyn wasn’t doing well. We thought, “How could this be?”, as I had held her for three hours that day, and she was fine. We were told not to come to the hospital as she would get worse before she got better, but they would be in touch. By 7:30 p.m. (just 30 minutes later), we received another call telling us they thought Caitlyn had NEC and that we should come to the hospital. We referred to our preemie book regarding NEC, and knew the statistics were against her. When we arrived at the hospital, there was about 10 doctors and nurses working on Caitlyn. We knew that was not a good sign. Her stomach was dark coloured and extended. We were shown the x-ray and saw the gases being released into her body.
They needed to transport her to Sick Kids Hospital as soon as possible, where surgery could be performed. Once her blood pressure and breathing were stabilized, the transportation happened. Sick Kids was just 2 minutes down the road and part of us hoped once she made it there the worst was over…but we were wrong.
The first doctor who met us there told us the statistics of babies with NEC, and then told us that Caitlyn would probably not make it through the night. Caitlyn had three blood transfusions and went through a series of tests, but nothing worked.
We, along with our families, sat next to her incubator for twelve hours, while she had her eyes open and watched us the whole time. Caitlyn died in my arms on April 16th, Easter Sunday at 9:30 a.m. That day a part of us was torn away. It was and is the saddest day of our lives. We miss her more than most would ever imagine.
We wanted to create babieswithnec.com to help other parents like us keep updated in the current research on NEC and to support one another by sharing stories. We hope we have helped you…this is Caitlyn’s wish.