Finding Purpose After Infant Loss

May 5, 2012

One month ago today would have been, should have been, my sweet daughter Caitlyn’s sixth birthday.  The Easter season is never easy for us, and ironically, shortly after the holiday, I am a part of this website as a guest blogger.  First, I wanted to share some of my story, and the legacy that grew from it.

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 preeclampsia 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!  She 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 15, 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 necrotizing enterocolitis (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, about ten doctors and nurses were working on Caitlyn. We knew that was not a good sign. Her stomach was dark colored and distended. We were shown the x-ray and saw the gases being released into her body.  They needed to transport her to a different hospital as soon as possible, where surgery could be performed. Once her blood pressure and breathing were stabilized, the transportation happened. The hospital was just two minutes away and part of us hoped once she made it there the worst was over.  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 16, 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.

As we began to heal and come to terms with her passing, we created a website to help other parents, like us.  At Babies with NEC, parents may share their NEC stories, stay updated on current research and hopefully, find support.  We hope that through our website, and organizations like Hand to Hold, parents find hope again.  This is Caitlyn’s wish.