Overview
Necrotizing enterocolitis, often called NEC, is a serious condition that mainly affects premature and very low birth weight newborns. In NEC, parts of the intestine (bowel) become inflamed and begin to die. This damage can lead to holes in the intestinal wall, allowing bacteria to leak into the abdomen and bloodstream, which can cause life-threatening infection. NEC most commonly occurs in babies born before 32 weeks of pregnancy or those weighing less than 1,500 grams (about 3.3 pounds) at birth. Symptoms usually appear within the first two to six weeks of life and can develop quickly. Early signs include a swollen or tender belly, feeding intolerance (not being able to keep milk down), bloody stools, and general signs of illness such as low energy, unstable body temperature, and breathing problems. Treatment depends on how severe the condition is. Mild cases may be managed with bowel rest (stopping feedings), intravenous fluids and nutrition, and antibiotics. More severe cases, especially when the bowel has perforated (developed a hole), require emergency surgery to remove the damaged sections of intestine. Despite advances in neonatal care, NEC remains one of the most common and dangerous gastrointestinal emergencies in premature infants. Outcomes have improved with early detection and aggressive treatment, but the condition still carries significant risks of complications and death.
Key symptoms:
Swollen or bloated bellyBelly tenderness when touchedBloody stoolsFeeding intolerance or vomitingGreen or yellow vomit (bile)Lethargy or decreased activityUnstable body temperatureBreathing difficulties or pauses in breathing (apnea)Low heart rate (bradycardia)Redness or discoloration of the belly skinDecreased urine outputLow blood pressureDiarrheaFailure to gain weight
Clinical phenotype terms (34)— hover any for plain English
Multifactorial
Caused by a mix of several genes and environmental factors
Neonatal
Begins at or shortly after birth (first 4 weeks)
FDA & Trial Timeline
10 eventsThe Children's Hospital of Zhejiang University School of Medicine — NA
Instituto de Investigacion Sanitaria La Fe
Central Hospital, Nancy, France
Hayatabad Medical Complex — NA
Imperial College Healthcare NHS Trust
Imperial College London
University of Calgary — PHASE3
The First Hospital of Jilin University
University Hospital, Clermont-Ferrand — NA
Boston Children's Hospital
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Necrotizing enterocolitis.
20 clinical trialsare actively recruiting — trials can provide access to cutting-edge therapies.
View clinical trials →Rare Disease Specialist
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Necrotizing enterocolitis.
Community
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Start the conversation →Latest news about Necrotizing enterocolitis
Disease timeline:
New recruiting trial: Predictive Diagnosis of Ulcero-Necrotizing EnteroColitis in Premature Babies Using an Artificial Intelligence Approach Based on Early Analysis of the Fecal Microbiota
A new clinical trial is recruiting patients for Necrotizing enterocolitis
New recruiting trial: Primary Anastomosis Versus Enterostomy in the Surgical Treatment of Necrotising Enterocolitis
A new clinical trial is recruiting patients for Necrotizing enterocolitis
New recruiting trial: Intestinal Lavage to Promote Enteral Feeding and Prevent Necrotizing Enterocolitis in Extremely Preterm Infants
A new clinical trial is recruiting patients for Necrotizing enterocolitis
New recruiting trial: WithHolding Enteral Feeds Around Blood Transfusion (International)
A new clinical trial is recruiting patients for Necrotizing enterocolitis
New recruiting trial: Impact of Standardized Skin-to-Skin Care on Clinical Outcomes in Infants Born ≤ 32 Weeks: A Multicenter Study
A new clinical trial is recruiting patients for Necrotizing enterocolitis
New recruiting trial: Qualitative Study of Surgeons With Prospective Patient Follow-up
A new clinical trial is recruiting patients for Necrotizing enterocolitis
New recruiting trial: Health-Related Quality-of-Life and Household Financial and Wellbeing Impacts of Prematurity and Necrotising Enterocolitis (NEC).
A new clinical trial is recruiting patients for Necrotizing enterocolitis
New recruiting trial: Study of Normal Intestinal Development and Disease in Premature and Term Neonates
A new clinical trial is recruiting patients for Necrotizing enterocolitis
New recruiting trial: Study to Assess the Safety, Tolerability, and Preliminary Efficacy of ST266 in Infants With Necrotizing Enterocolitis
A new clinical trial is recruiting patients for Necrotizing enterocolitis
New recruiting trial: Early Predictors of Necrotizing Enterocolitis in Neonates
A new clinical trial is recruiting patients for Necrotizing enterocolitis
Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.How severe is my baby's NEC, and what stage is it?,Will my baby need surgery, and what are the risks?,How much intestine was affected or removed, and will this cause long-term problems?,When can we start feeding my baby again, and what type of milk or formula is best?,What are the signs of complications I should watch for after discharge?,Will my baby need developmental follow-up, and how often?,Is there anything I can do to reduce the risk of NEC happening again or getting worse?
Common questions about Necrotizing enterocolitis
What is Necrotizing enterocolitis?
Necrotizing enterocolitis, often called NEC, is a serious condition that mainly affects premature and very low birth weight newborns. In NEC, parts of the intestine (bowel) become inflamed and begin to die. This damage can lead to holes in the intestinal wall, allowing bacteria to leak into the abdomen and bloodstream, which can cause life-threatening infection. NEC most commonly occurs in babies born before 32 weeks of pregnancy or those weighing less than 1,500 grams (about 3.3 pounds) at birth. Symptoms usually appear within the first two to six weeks of life and can develop quickly. Early
How is Necrotizing enterocolitis inherited?
Necrotizing enterocolitis follows a multifactorial inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Necrotizing enterocolitis typically begin?
Typical onset of Necrotizing enterocolitis is neonatal. Age of onset can vary across affected individuals.
Are there clinical trials for Necrotizing enterocolitis?
Yes — 20 recruiting clinical trials are currently listed for Necrotizing enterocolitis on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Necrotizing enterocolitis?
25 specialists and care centers treating Necrotizing enterocolitis are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.