Living with Necrotizing enterocolitis
A condition in which parts of a newborn's intestines are damaged, most often in premature babies.
Understanding Necrotizing enterocolitis
It most often occurs in premature babies, but can also occur in babies born at or near term. Signs can include a swollen belly, bloody stools, vomiting of green-yellow fluid, and gas in the bowel wall on an x-ray. Some babies have unstable body temperature, low energy, or signs of sepsis (a serious reaction to infection).
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Swollen belly (abdominal distention)
- Bloody stools or diarrhea
- Vomiting of green-yellow fluid
- Poor feeding
- Low energy
- Bluish skin color (cyanosis)
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include digestive system specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Digestive system specialists (gastroenterologists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with AGA GI Patient Center and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
The exact cause of NEC is unknown.
Also known as: nec
Patient organizations
- AGA GI Patient CenterNecrotizing enterocolitis · United States
- NEC SocietyNecrotizing enterocolitis · United States
You are more than your diagnosis
Perspectives from people navigating life with Necrotizing enterocolitis.
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- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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