The NEC Society frequently shares stories of babies impacted by NEC- this is Kyran’s story.
By Candace Kyran was our rainbow baby. About six months before I conceived him I had had a miscarriage, with this and being overweight, I was labeled a high risk mother. I went in for ultrasounds and blood work at least twice a month and once I was 29 weeks along I was to report to the hospital two to three times a week for monitoring. When I was 34 weeks and 4 days along I had a monitoring appointment. I was in the room for a few hours (much longer than normal) when the nurse came in and told me my doctor wanted me to go to the labor and delivery floor because she didn’t like the readings she was seeing.
A few hours later, I was told that my baby wasn’t getting enough oxygen and I needed an emergency C-section. Calls were made and I was prepped for surgery; my husband made it in from work just as my surgery was starting. A few moments later Kyran was here, pink and screaming, nothing wrong except he was six weeks early and was just under four pounds.
The moment he was born and cleaned up the nurses fed him a bottle of formula without ever asking me if that was what I wanted. I was discouraged from breastfeeding and was told my breast milk was being fortified to help him gain weight. When he was seven days old, I received a call saying that my son had a stomach infection and I was asked if it was ok to treat him with antibiotics. Before it was even long enough to call in for a checkup I received a second call telling me he was not doing well, this continued until my mother was off work and was able to drive me to him.
I was stopped by multiple nurses telling me to prepare myself because my baby didn’t look like he did the night before. I wasn’t prepared. He was attached to breathing machines, a morphine drip, heart monitors, and other IV’s. His belly was purple; and that’s about where I broke. I waited in the hall while they did x-rays to confirm his condition. The doctor came out and told me that Kyran needed to go to the children’s hospital for surgery for intestinal perforations. While waiting for the ambulance to pick us up, Kyran’s heart rate dropped. He went into cardiac arrest right there. I was ushered out of the room while the EMT’s from the children’s hospital tried to revive him.
I don’t know how long I waited. Eventually someone came to tell me that he didn’t make it. I was to call my husband so we could say our goodbyes. The doctor tried his best to explain what NEC was but he wasn’t entirely informed, he said it was just a thing that happened to some preemies. Unsatisfied with that answer I did my own research. I believe all NICU staff should have proper information and be milk friendly to parents of preemies. I hope that Kyran’s story can raise awareness about this disease.
You can read other babies’ stories on our NEC Stories page.