While many friendships begin through shared interests, Taylor and Jenn’s friendship began through the NEC Society and shared grief, after they each lost a child – Colton and Brooks – to necrotizing enterocolitis (NEC).
NEC is a devastating intestinal disease that can affect premature and medically fragile infants in their first weeks to months of life. NEC leads to severe inflammation in the intestine, and often appears suddenly and progresses rapidly, blindsiding families and clinicians.
Taylor and her husband, Tim, live in Ohio. They experienced an emotional rollercoaster when trying to conceive – but after nearly two and a half years, they were overjoyed with the unexpected news that Taylor was pregnant. Taylor’s pregnancy was challenging, and a mid-pregnancy anatomy scan led to a diagnosis of intrauterine growth restriction (IUGR).
At 27 weeks, Taylor was admitted to the hospital and diagnosed with severe preeclampsia. Days later, her symptoms progressed into HELLP syndrome – which is life-threatening. Taylor needed an emergency C-section, and on November 1, Taylor gave birth to a beautiful baby boy, Colton James, weighing 1 pound, 13 ounces.
Taylor and Tim were filled with hope and love as Colton grew stronger every day in the NICU. But 10 days later, Taylor and Tim received a phone call that changed everything.
Colton’s stomach was distended, he was lethargic, and diagnosed with necrotizing enterocolitis. Tragically, just hours later, Colton passed away from NEC with his loving parents at his bedside.
Taylor and Tim had never heard of NEC, and now, only 11 days into parenthood, they were devastated by the unimaginable loss of their baby boy.
While Taylor and Tim navigated the profound grief of carrying Colton in their hearts rather than their arms, another family in Tennessee faced the same heartbreak.
Jenn and her husband, Jesse, were eagerly awaiting the arrival of their second child. At 21 weeks, Jenn experienced PPROM and needed to drive across state lines to receive specialized care. On November 26, Jenn needed an emergency C-section, and her son, Brooks, was born at 23 weeks gestation, weighing just under two pounds.
As Brooks grew in the NICU, Jenn and Jesse spent every moment they could by his side, filled with love and hope. They began to see the path to bringing Brooks home.
On December 22, Brooks’ care team told Jenn and Jesse that he was having one of his best days since birth, but then later that same night, everything changed. Jenn and Jesse rushed to the hospital and found their son, Brooks, had become very sick very fast. NEC was suspected, but before a diagnosis could be made, Brooks tragically passed away within the hour, surrounded by love.
Jenn was heartbroken. The devastating loss of Brooks left a deep, unimaginable ache in her life. Jenn felt isolated and alone, and began to reach out to others who might understand her trauma. That is when Jenn and Taylor crossed paths and found their mutual support for the NEC Society’s vision of a world without NEC.
Jenn and Taylor realized their stories mirrored one another. They both felt lost and confused about what NEC was, and were utterly shocked by how quickly NEC had taken the lives of their beautiful boys. Their conversations were raw, honest, and desperately needed. They talked about impossible medical decisions, guilt, and the painful quiet that follows. There was something sacred about finding and talking to another mom about child loss. There were no explanations or fixes, just shared understanding.
As days, weeks, and months have gone by, Jenn and Taylor share how sometimes the weight of grief feels heavier, and they carry it together and support one another. Other days, they feel stronger and more capable of carrying and navigating the weight of their grief. That is the beauty of their friendship — no expectations – just show up as they are for one another.
In each other, Taylor and Jenn discovered a space to be fully seen and heard, where the ache of loss could be shared without explanation, and where they could begin paving their own path towards peace. Their bond became a reminder that in the isolating devastation of NEC, connection and community can be found.
Now, Taylor and Jenn are transforming their pain into power. They’re advocating for NEC awareness in Ohio and Tennessee, working toward an official NEC Awareness Day resolution to honor Colton and Brooks and to shed light on this cruel disease.
Taylor and Jenn are dedicated to honoring their precious boys by helping to advance the NEC Society’s research, education, and advocacy, and expanding this community of families and people who care.
The NEC Society is working tirelessly to honor babies like Brooks and Colton, and to stand beside all families navigating the devastation of NEC.
Taylor and Jenn ask that you join us in honoring the babies who should still be here, in standing with the families who have been affected by NEC, and in supporting the NEC Society’s work in building a world without necrotizing enterocolitis.
Explore the NEC Society’s resources for bereaved families here. If you are a patient-family who is in search of a safe space to connect with others who have been impacted by NEC, we encourage you to join our NEC Society Connects FaceBook Group.
