Written by Madilyn’s mother: Marlayna McBride, RN
Our daughter Madilyn (Maddy) Mathea McBride was born via emergency cesarean in 2009, thirteen weeks prematurely. She was delivered at a small community hospital, and was immediately transported to a Sacramento level III Neonatal Intensive Care Unit. 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 bubble cpap. We were also 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 days Maddy continued to thrive, until day five when she began having an increase in apneas, bradycardias 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 the nurses were pulling green colored residual from her belly. We were told by her doctor 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.
It was not until I was in nursing school three years later, that I was told Madilyn had NEC. During my NICU clinical rotation I shadowed one of the nurses who cared for Maddy on the day she passed. This nurse told me that NEC was the infection that Maddy was fighting. 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 nurses who cared for her, and 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, and I strive daily to prevent this devastating disease.