When Your Baby Gets NEC: What Parents Experience — and What the Research Says About Their Needs

Exploring how families navigate one of the NICU’s most frightening diagnoses, from the first conversation to the years that follow

A Disease That Arrives Without Warning

If your baby is in a neonatal intensive care unit — a NICU — you already know that the world can change very quickly. You learn the rhythm of monitors and alarms. You learn which nurses bring comfort and which machines mean progress. And then, sometimes, in the space of a few hours, everything you had carefully learned to read becomes irrelevant, because a new diagnosis has arrived to rewrite the situation entirely.

Necrotizing enterocolitis — called NEC for short — is one of the most feared diagnoses in neonatal medicine, and also one of the least known outside of it. Pronounced nek-roh-tie-zing en-ter-oh-coh-lie-tis, it is a severe intestinal disease that primarily affects babies born prematurely, particularly those born before 32 weeks of pregnancy. In the United States, more than 3,500 babies develop NEC every year. [[1]] Between 15 and 40 percent of those babies will die from the disease. [[2]] For the families who live through it — whether their baby survives or not — the experience leaves marks that last long after the NICU stay is over.

This article is about those families: what they go through, what they need, and what research has found about the gap between what families actually experience and what they ought to be supported through.

What NEC Is — and Why It Moves So Fast

NEC happens when the wall of the intestine becomes severely inflamed, often to the point where the intestinal tissue begins to die. Bacteria that normally live in the gut can break through the damaged wall and spread into the body. In the worst cases, the infection spreads quickly — causing blood poisoning, organ failure, and death, sometimes within hours. [[1]]

Because premature babies have immature immune systems and immature intestines, they are most vulnerable. The less time a baby has spent developing before birth, the higher the risk. Extremely premature babies — those born at 23, 24, or 25 weeks of pregnancy, some weighing less than a pound — face the greatest danger. But NEC can appear in babies born at 33 or 35 weeks too, and occasionally even in full-term babies with other health conditions.

One of the hardest things about NEC for families is how suddenly it arrives. Many babies who develop NEC have been in the NICU for days or weeks, gradually getting stronger, taking more feeds, gaining weight. Parents have started to relax — just a little. And then, sometimes within a single shift, the baby’s belly becomes distended, a feed is not tolerated, the skin takes on a mottled colour, and the medical team’s faces become different. Families describe this transition as a kind of rupture — the world of gradual progress crashing suddenly into a world of crisis.

What Parents Were — and Were Not — Told

Researchers at the University of Michigan and the NEC Society surveyed 110 parents of NEC-affected babies from around the world in 2017, and the results were striking. Only 32 percent of those parents felt satisfied or very satisfied with the information they had received before their baby was diagnosed with NEC. [[3]]

The parents in that survey did not want to be protected from difficult information. They wanted the opposite. They wanted to know about NEC — what it was, what the warning signs were, which babies were most at risk — when they first arrived in the NICU, not after their baby was already critically ill. [[3]] Not one parent said they felt frightened by honest information. Many said they were frustrated by information that was softened or incomplete — that left them unprepared for what came next. [[3]]

Parents who were given clear, honest information and a defined role in their baby’s care were significantly more satisfied with their experience than those whose concerns were dismissed. Some parents described having to fight to be heard — having to advocate against clinical decisions, having to push for attention to something they had noticed about their baby before the monitors had picked it up. [[3]] Being shut out of that process — being treated as anxious background noise rather than as the person who knew their baby best — was deeply painful.

After the Gadepalli et al. survey was published, the NEC Society brought together clinicians, researchers, and families for the first NEC Symposium, a conference dedicated entirely to this one disease. [[4]] One of the clear messages from families in that room was that they wanted to be included — as partners, not spectators — in the care of their own baby.

The Weight of Guilt — and the Milk Question

One of the most painful parts of the NEC experience for many families involves breastfeeding.

The evidence that breast milk — whether from the baby’s own mother or from a donor milk bank — reduces the risk of NEC is strong. Babies who receive human milk have substantially lower rates of NEC than babies who receive cow’s milk-based formula. [[5]] NICUs around the world are increasingly using donor milk for this reason.

But this message creates a particular cruelty for parents whose milk supply was slow to arrive or insufficient. If your baby received formula in the early days, you may feel responsible for what followed. That guilt can be overwhelming.

Jennifer Canvasser described pumping breast milk through Micah’s entire illness as the one thing she could still do — her “one source of empowerment” in a situation where all other parenting responsibilities had passed to the clinical team. [[6]] She pumped for over two years, donating surplus milk to other NICU families after Micah died.

A mother writing for Hand to Hold described the guilt she felt when her son Luke received formula before her milk came in. He later developed NEC and required emergency surgery. No planet, she wrote, was large enough to contain that guilt. [[7]]

What these families needed to hear — and what the NEC Society has published guidance to address — is that NEC is a complex disease with no single cause. Many babies who develop NEC were fed exclusively on their mother’s own milk. A parent did not cause their baby’s NEC by being unable to produce enough milk. [[1]]

When a Baby Dies

For families whose babies do not survive NEC, grief takes on dimensions that are hard to describe to people who have not been through it.

Parker Skrysak was born in Springfield, Illinois, more than 17 weeks premature — arriving into a world his body had not had nearly enough time to prepare for. He lived for 55 days. His parents Stacey and Ryan had never heard of NEC before NICU admission; the disease entered their lives without context, without history, without any framework for understanding what it was. Parker died from complications following surgery for NEC. Stacey Skrysak has described the grief as “lifelong,” as “indescribable and unfathomable.” [[8]]

Jasmine Watson’s son Chance Dean died from NEC after receiving formula during his NICU stay. Watson later became the plaintiff in the first-ever jury trial against a formula manufacturer for NEC, a case that resulted in a $60 million verdict against Mead Johnson in March 2024 in Illinois. [[9]] Her search for accountability was, in one sense, legal. In another, it was the search that many NEC families undertake — for an explanation, a cause, a reason that might make the loss feel something other than entirely random.

The NEC Society provides what it calls Bereaved Family Resource Boxes — developed by bereaved parents themselves — because families who lose a child to NEC often find that the world does not know how to hold their grief. [[10]] Bereaved NEC families are often left with grief that feels invisible to those around them.

Life After NEC — When the Baby Survives

For families whose babies survive NEC, the NICU discharge is not an ending. The first survey to systematically ask NEC survivors and their families about life beyond the NICU — conducted by the NEC Society and published in 2023 — found that roughly three-quarters of NEC survivors carry long-term complications. [[11]] These complications can affect digestion, breathing, movement, and learning. About half of the families surveyed said their child had needed additional surgery after leaving the NICU. About 39 percent said NEC had affected their child’s quality of life in the long term. [[11]]

One NICU mother whose son Luke survived NEC surgery described, writing for Hand to Hold several years later, that the disease had “long left his body” but its effects remained: Luke, at nearly three years old, was still struggling with sensory challenges and difficulties with food textures, which she attributed directly to the NEC and the NICU experience. [[7]]

What the 2023 survey also found — and what NEC survivors said directly at a 2019 NEC Symposium — is that healthcare systems often do not recognise NEC’s long-term effects. Survivors described feeling dismissed by doctors who did not know how to account for their symptoms within existing diagnostic categories. [[11]] Families navigating the long-term medical needs of a NEC survivor can feel as isolated as they did during the acute crisis — still without a map, still translating a disease that the world around them does not understand.

What Is Changing — and What Still Needs to Change

The NEC Society was founded in 2014 by Jennifer Canvasser after she spent a year of grief looking for an organisation working to prevent NEC and found that it did not exist. Today the NEC Society runs the world’s largest conference dedicated to NEC, maintains a biorepository of NEC tissue samples across eight research centres, and has brought the NEC family perspective to the US Congress, the FDA, the CDC, and the NIH. [[1]]

The parental perspective has also reached the courtroom. Families who believe their babies developed NEC because of cow’s milk-based formula marketed without adequate risk warnings have filed hundreds of lawsuits against Mead Johnson and Abbott Laboratories, with multi-hundred-million-dollar verdicts in 2024 and 2026. [[9]] Whatever one believes about the litigation’s science, it reflects what clinical and research communities need to hear: families who were not told what was known about NEC risk, and who suffered because of that silence, will not remain silent themselves.

Lelis Vernon, whose twin sons received a NEC diagnosis ten days after birth, described advocacy as transforming her family’s “trauma and pain into something meaningful.” [[12]] What families still need — and what the research makes plain — is to be told honestly about NEC before it happens, to be included as partners in care when it does, to be heard when they notice something is wrong, to be supported without shame around the breastfeeding question, to be given a real bereavement framework if their baby dies, and to be followed through years of medical complexity if their baby survives. None of this is beyond the capacity of good medical systems to provide.

References

  1. NEC Society. Our Why. NECSociety.org. Updated March 2026. Available at: <https://necsociety.org/our-why/> ↩
  2. NEC-Related Infant Mortality Rate Decreasing in Recent Years. HCPLive. 2023. Available at: <https://www.hcplive.com/view/nec-related-infant-mortality-rate-decreasing-recent-years> ↩
  3. Gadepalli SK, Canvasser J, Eskenazi Y, Quinn M, Kim JH, Gephart SM. Roles and experiences of parents in necrotizing enterocolitis: an international survey of parental perspectives of communication in the NICU. Adv Neonatal Care. 2017;17(6):489–498. doi:10.1097/ANC.0000000000000438 ↩
  4. Umberger E, Canvasser J, Hall SL. Enhancing NICU parent engagement and empowerment. Semin Pediatr Surg. 2018;27(1):19–24. doi:10.1053/j.sempedsurg.2017.11.004 ↩
  5. National Institute of Child Health and Human Development. Necrotizing Enterocolitis (NEC) in Preterm Infants: NICHD Working Group Report. September 2024. Available at: <https://www.nichd.nih.gov/sites/default/files/inline-files/2024.09.16_NEC_WG_report_FINAL.pdf> ↩
  6. Canvasser J. When Mother’s Milk Was All I Had to Give. NEC Society Blog. Available at: <https://necsociety.org/advocacy/when-mothers-milk-was-all-i-had-to-give/> ↩
  7. Anonymous NICU mother (Luke’s mother). Breastfeeding a NEC Baby. Hand to Hold. Published 5 April 2018. Available at: <https://handtohold.org/breastfeeding-a-nec-baby/> ↩
  8. NEC Society. Illinois family shares tragedy of losing son to necrotizing enterocolitis, as NEC Society prepares for the NEC Symposium in Chicago. EurekAlert. 22 August 2025. Available at: <https://www.eurekalert.org/news-releases/1095711> ↩
  9. Pierson B. Reckitt unit hit with $60 million verdict in Enfamil baby formula case in Illinois. Reuters via AOL News. 14 March 2024. Available at: <https://www.aol.com/reckitt-unit-hit-60-million-215214802.html> ↩
  10. NEC Society. Family Resource Boxes. NECSociety.org. Updated April 2025. Available at: <https://necsociety.org/family-resource-boxes/> ↩
  11. Canvasser J, Patel RM, Pryor E, Green L, Hintz SR, Fagan M, Harrison JD. Long-term outcomes and life-impacts of necrotizing enterocolitis: a survey of survivors and parents. Semin Perinatol. 2023;47(1):151696. doi:10.1016/j.semperi.2022.151696 ↩
  12. Vernon L. Family reflections: NEC families are partners in research. Pediatr Res. 2023;94(2):845–846. doi:10.1038/s41390-023-02631-0 ↩