Written by Marlayna McBride, RN, mother of Baby Madilyn
Our daughter Madilyn was born via emergency cesarean thirteen weeks prematurely. She was delivered at a small community hospital, and was immediately transported to a level III NICU. My husband and I knew very little about parenting a premature infant, but we were reassured by her nurses and physicians that she had a high chance of surviving.
Maddy was initially dependent on the ventilator, but on her second day of life she was switched to cpap. We were told that the labs drawn the day before showed no signs of infection. When we visited the next day, we were told that because she was doing so well, they were going to start feeding Maddy my breastmilk. This was especially exciting for me as I finally felt like I could do something a “normal mother” could do.
Over the next couple of days, Maddy continued to thrive, until day five when she began having an increase in apneas, bradycardia, and desaturations. Her doctor ordered labs, and placed her back on the ventilator, as it was clear her frail body was fighting an infection. Antibiotics were started, her feeds were discontinued and we were told that she had a grade II brain bleed. The next morning, we were told that her blood pressure had become unstable and that she was very sick, but there was never any mention of the possibility of Maddy having necrotizing enterocolitis.
The next day, Madilyn made little progress. I began to feel myself pull away from her, as if subconsciously I knew she would not survive. Early the following morning her doctor called and told us to come to the NICU right away. It was at that moment, I knew she would never come home with us. I broke down, and to this day I do not know how my husband calmed me enough to make the trip to the hospital.
Upon arriving, my husband asked what Madilyn’s head circumference was earlier that morning. Her nurse told us that it had increased quite a bit, and that a head ultrasound was done. Immediately after hearing this devastating news, Madilyn had a seizure. We knew that an increase in head circumference meant that her brain bleed had gotten much worse, and that she would never have the life we dreamt for her. Her doctor came in, and invited us to speak with him about what exactly was going on.
With family gathered around, her doctor told us that Madilyn was severely septic and that her body was failing. He also told us that the bleed in her brain was now in the ventricles, and that he felt it was best to withdraw care. My husband and I devastatingly agreed that letting Madilyn go was the right thing to do. Shortly after, a nurse brought our beautiful baby girl to us so we could hold her one last time. We rocked her, told her how much we loved her and sobbed as our Maddy’s spirit left her tiny body.
After Maddy passed away, I went back to school to become a nurse. Three years after Maddy’s death, during nursing school, I finally learned that my daughter had died from necrotizing enterocolitis. During my NICU clinical rotation, I shadowed one of the nurses who cared for Maddy on the day she passed. Maddy’s nurse told me that NEC was the infection that Maddy was fighting and had died from. It was at this moment, I decided I wanted to work in the NICU as an RN and help other babies like my Madilyn. I am now working alongside the same nurses who cared for my daughter, and I know in my bones that I am working exactly where I am meant to be.
Madilyn will forever be a part of our family, and her litter brother and sister both know she is our angel. Necrotizing enterocolitis should never happen. As a mother and a NICU nurse, I strive daily to prevent this devastating disease.
Do you have a NEC story you want to share? Tell us here.