Written by Julie Cavellini, Labor & Delivery nurse and mother of Brooks and Carys Cossey

After struggling with infertility for years, I was ecstatic to finally be pregnant with my son, Brooks. After three rounds of IVF, I was willing to do anything to give my precious baby boy the healthiest pregnancy possible. Despite doing everything “right,” my water broke at 21 weeks. We met with the neonatologist at 22 weeks, and I had just one question for her. You see, as a labor & delivery nurse for a high-risk hospital, I’d been on the other side of this conversation countless times. I knew the odds and what our likely course might be. However, there was one thing I wanted to know more about: necrotizing enterocolitis (NEC). Over the years, I had taken care of so many patients with preterm babies who were doing so well, and then suddenly they developed NEC and everything changed. Since Brooks would be born prematurely, I knew he would be at increased risk of this devastating intestinal disease. I wanted to know as much as possible about NEC.

Weeks of bedrest gave Brooks more of the time he desperately needed to develop, and then on January 9th Brooks was born at 23.5 weeks, weighing 1lb 4oz.

When Brooks was just 4 days old, he gave us a good scare when he had a spontaneous bowel perforation. The surgeon created an ostomy on this tiny baby and everyone was pleased that it was not NEC. I pumped diligently, around the clock, because I knew that if we could make it to 34 weeks, Brooks’ odds of NEC dramatically decreased if he received my breastmilk. Reflecting back now, I wish I had questioned the bovine-based fortifier they added to my breastmilk. I understand that preemies like Brooks have higher nutritional needs, but I wish Brooks would have received an exclusive human milk diet.

As we approached his original due date of May 2, I remember someone asking me if Brooks was “out of the woods.” Looking at our beautiful boy who had come so far I, of course, replied yes!

How wrong we were.

Just a few weeks later, within hours, Brooks started to slip away. First, he was back on the vent requiring more respiratory support. Then he had a fever. Lastly, when they repeated the X-ray they saw what I had been fearing since before Brooks was even born: NEC.

The surgeons quickly went to work, but Brooks’ entire bowel was already dead. After a countless parade of visitors who loved our precious Brooks, he passed away in our arms the next day.

Brooks received superb care in the NICU at Medical City Dallas Hospital, where dozens of compassionate, talented, kind-hearted nurses, doctors, and respiratory therapists loved and genuinely cared about him.

My husband and I are grateful for the NEC Society. It is comforting to connect with other families, and so encouraging to see the NEC Society bringing the community together to build a world without this deadly disease. Sharing our son’s story and being involved in the NEC Society ensures Brooks stays alive in our hearts and minds. I continue to love my work as an L&D nurse because it’s given me the chance to build Brooks’ legacy – my ability to connect with and help care for NICU mamas. We are forever honored to be his parents, and deeply miss our sweet Brooks every day.