Written by Walter’s parents, Dustin & Taylor
When I was 32 weeks pregnant, we went in for a routine OB appointment —but they discovered my blood pressure was dangerously high, so I was sent to the emergency room.
In the ER, I was diagnosed with severe preeclampsia and admitted to the hospital. At 33 weeks gestation, we had no choice but to welcome our baby boy, Walter Daniel Heap, into the world. He weighed 4 pounds 8 ounces and was strong from the very beginning. He progressed every day, coming off oxygen, eating more, and thriving. His care team assured us Walter was one of the strongest little fighters and would likely be home in the coming weeks.
We soaked in every moment. Holding him close. Changing his tiny diapers. Reading to him. Telling him all about his two doggy siblings waiting for him at home. We believed the hard part was behind us.
Days later, we received a phone call at 1:30 a.m. that flipped our world upside down. Walty had developed necrotizing enterocolitis (NEC) and was very sick. Our doctor told us they were doing everything they could.
Nothing could have prepared us for walking into his NICU room, where he was sedated and on a ventilator. We felt so powerless that we couldn’t help him – I felt I failed as his mother. Over the next several hours, we met with multiple doctors, trying to process information that felt impossible to absorb. They told us they had never seen NEC develop so aggressively in a baby of Walter’s size and age.
After his NEC diagnosis, Walty endured blood draws and X-rays every few hours around the clock. Each time, the results were worse. His intestines began to die as they filled with gas and pressed against his lungs and heart, furthering his complications.
Later that evening, Walter’s neonatologist and surgeon met with us privately to explain that the damage to his intestines was too extensive and that his body had been without adequate oxygen for too long, so they laid out our options:
- Attempt surgery, but Walter might not survive it.
- Continue with aggressive medical treatment and hope for a miracle.
- Keep Walter comfortable for whatever time we had left. Family members – beyond just parents and grandparents – would be allowed to come into the NICU to hold him.
We talked. We prayed. We cried. And we made the most devastating decision of our lives for our five-day-old son. We told our parents to let Walty’s aunts and uncles know they needed to come to the NICU.
As we walked back toward Walty’s room, everything happened at once.
Alarms blared, lights flashed, doctors and nurses rushed in, all desperately trying to save our little boy. We stood outside his room and watched the chaos unfold. Glancing into the room next door, a baby was no longer hooked up to any machines, no hood over their bed, their parents living in bliss, while our world collapsed around us.
The nurses brought us into Walter’s room.
We stumbled past IV poles, ventilators, his little bed where they were performing CPR on our son, over to two empty chairs. Forty-eight hours earlier, we had sat in those same chairs reading to him, planning holidays, designing his birth announcements, and floating on cloud nine as new parents.
A nurse gently placed Walty into our arms while another continued to bag him. Then they stopped.
Moments later, his heart stopped, too.
Just like that, NEC stole our first and only child—five days, twelve hours, and thirty-four minutes after he entered this world.
In the aftermath of his death, we knew we wanted to do something—anything—to help families affected by NEC. This pain is unlike anything else. No parent should ever have to feel the devastation this disease causes.
Our NICU had never seen a baby of Walty’s age or size develop NEC so severely and so quickly.
He is truly and forever our one-of-a-kind baby boy.
As we write our son’s story, it’s hard to believe how much time has passed since we said goodbye.
I can still feel the softness of his warm skin against my chest. I can still see the tiny trail of drool slipping from his mouth onto my own skin — the smallest, most ordinary detail, now one of the most sacred. ~ Walty’s Mom
We still carry the dreams we had for him. The laughter we imagined. The milestones we longed to witness. The life we pictured unfolding before him.
We will forever parent our sweet angel and keep his memory alive. And we will fight for a future where no family ever has to experience the cruel devastation of 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.
