With Micah in my heart and the NEC Society in my hands

“Like most mothers, I never imagined myself in the NICU with medically fragile children. Prior to my twins’ birth, I didn’t think the NICU roller coaster would happen to me because I would do everything “right” to prevent it. As our children have a way of showing us, some things in life are completely out of our control. Some things – like premature birth – just happen, without a known explanation or reason.

I was thrown into the NICU journey woefully unprepared. I had never stepped foot into a NICU. I had never seen a breast pump. I had never seen anything other than healthy, full-term, roly-poly newborns. As a new NICU mother, I was overwhelmed by guilt, anxiety, and intense fear of losing the children I had spent years trying to conceive because of infertility.

My twins, Micah and Zachary, were born at 27 weeks gestation and were typical preemies. By the time they were six weeks old, they had overcome most of their obstacles, weighed five pounds, and were beginning to breastfeed. For the first time since their birth, I felt lighter. I could feel our life in the NICU ending happily-ever-after, with two healthy baby boys coming home in just a few weeks.

One Sunday afternoon derailed everything. Micah shocked everyone when he developed necrotizing enterocolitis. I was devastated that Micah’s weeks of progress could vanish in mere hours. By Sunday evening, Micah was critically ill and continuing to deteriorate. Micah remained critical for months, but somehow he fought through the exploratory laparotomy, bowel resections, peritoneal dialysis, continuous renal replacement therapy, and constant instability.

After months without progress, Micah turned a corner and finally began to improve. Yet, he had developed end-stage renal disease and would require a kidney transplant to survive. I knew we would get Micah his lifesaving transplant, and I mentally prepared myself to be his donor.

Micah came home for the first time when he and Zachary were 10 months old. It felt like a dream come true to be home together. I thought our most difficult days were behind us.

Tragically, Micah died from his complications of NEC when he was 11 months old.

Initially, I didn’t know how to eat or sleep without Micah. Somehow, I figured out how to live without Micah in my arms by finding ways to celebrate Micah, through sharing memories of Micah with Zachary, and by giving back to other families in the NICU.

After a year of intense grieving, I was ready to donate my skills as a macro-practice social worker to an organization working to prevent necrotizing enterocolitis. But, the organization I was looking for didn’t exist. So, I created what I was looking for: the NEC Society, a nonprofit that brings together diverse stakeholders dedicated to improving outcomes for babies at risk of NEC.

Since 2014, the NEC Society has evolved into an incredible team of patient-family advocates, scientists, clinicians, and partners working to drive research, raise awareness, and improve practices for babies like Micah.

While the NEC Society started because of Micah, it has never been about Micah. The NEC Society is dedicated to all babies impacted by this devastating disease and their families, as well as the extraordinary clinicians who care for them. It is inspiring to witness stakeholders from around the world commit their time, skills, and resources to improving outcomes for babies at risk of NEC. Together, we are making a difference and moving us closer to reducing the risks, so that we can someday #preventNEC. The NEC Society has given me a sense of peace because it keeps me feeling close to Micah. With Micah in my heart, I am privileged to have the NEC Society in my hands.”

Jennifer, October 2018