Cookies help us deliver our services. By using our services, you agree to our use of cookies. Learn more

Necrotizing enterocolitis

What is Necrotizing enterocolitis?

Necrotizing Enterocolitis - often abbreviated to NEC - is a rare disease affecting newborns. The affected newborns are typically infants born premature or with a very low birth weight.  NEC can occur as well in full term infants who appear to have a healthy weight. NEC is characterized by causing inflammation and necrosis (tissue death) in the large and small intestines. It typically occurs after birth and has not been found in stillborns. NEC manifests in the first two weeks of infancy. NEC is defined as either the second or leading cause of death of infants. However, if appropriate treatment is given, many affected infants do not experience further complications.

 

Necrotizing Enterocolitis - often abbreviated to NEC - is a rare disease affecting newborns. The affected newborns are typically infants born premature or with a very low birth weight.  NEC can occur as well in full term infants who appear to have a healthy weight. NEC is characterized by causing inflammation and necrosis (tissue death) in the large and small intestines. It typically occurs after birth and has not been found in stillborns. NEC manifests in the first two weeks of infancy. NEC is defined as either the second or leading cause of death of infants. However, if appropriate treatment is given, many affected infants do not experience further complications.

Acknowledgement of Necrotizing enterocolitis has not been added yet.

NEC occurs in approximately 1 in 1000 live births. The prevalence increases among premature infants (before 37 weeks), low birth weight (less than 1500 grams), or both. Some affected premature infants who have a low birth weight may develop the syndrome.

Synonyms for Necrotizing enterocolitis has not been added yet.

The causes of NEC are not fully known. It is possibly due to a lack of oxygen, too many red blood cells, or reduced blood flow to the intestines. This causes the intestines to become weaken, and more susceptible to damage from bacteria that enter the intestines. In premature infants many organ systems are underdeveloped, making it difficult for them to fight infections and to digest food. The chance for developing NEC increases with infants having other gastrointestinal diseases and difficulties.

Before birth, the intestinal environment of the infant is sterile. After birth, it becomes populated with bacteria. If there is an overabundance of a type of bacteria called gram negative bacteria, damage can occur in the intestinal epithelium and trigger abnormal inflammation. A lack of blood flow (ischemia) causes a type of tissue death called coagulation necrosis.

If the inflammation and necrosis create a hole in the intestinal wall, then the bacteria in the intestine can seep out into the abdominal cavity. This can cause severe infections and is considered a medical emergency.

Symptoms manifest as feeding intolerance or the inability to digest certain foods, abdominal dissention or tenderness, decreased bowel sounds, and blood in the stool. These symptoms can also be caused by other gastrointestinal diseases. As NEC progresses, the symptoms can include lethargy, long pauses in breathing (apnea), temperature instability, and difficulty pumping fluids to organs (profusion). Redness of the abdominal area (erythema) indicates disease progression of the disease. These symptoms can progress to cardiovascular and respiratory difficulties.

NEC can be diagnosed based on symptom manifestation, by touching the abdomen to see if any tenderness or pain is present, and checking the stool for blood (guaiac test).

Imaging technology reveal air or indicators of air in the intestinal wall (pneumatosis intestinalis), and thickened bowel walls.

Clinical evaluation can be used to determine the severity of the disease, such as a blood culture, coagulation time, images of air in veins, blood acidity (acidosis), and blood cell count. A needle can be inserted in the infant’s abdomen in order to check it there is intestinal fluid.

Diagnostic tests include microbiological assessments, ultrasound and radiography.

Treatment is primarily supportive. Minimizing bowel movements, antibiotics for infection or infection prevention, stopping enteral feeding (inserting food directly into the stomach),  intravenous feeding, gastric decompression (inserting a tube through the nose to remove stomach contents), and giving fluids. Some infants may require breathing assistance. It is important to monitor the symptoms. The infant may need several images or X-rays per day.

If treatment is insufficient, the parts of the bowel with severe necrosis (tissue death) will need to be removed. This typically occurs later in life. Another surgical option is to drain the fluids from the abdomen.

Breast milk and foods with high level of probiotics have been shown to have preventative qualities.

With the proper and successful medical treatment, the recovery period is a couple of weeks. Survival rates are relatively high. If treatment is successful, many infants experience a full recovery.

Infants with surgical removal of necrotic tissue may experience malnutrition.

Parents should monitor their children carefully and contact their healthcare provider if case symptoms appear.

Bundhoo, A., & Matson, A. (2015). Necrotizing Enterocolitis - NORD (National Organization for Rare Disorders).  http://rarediseases.org/rare-diseases/necrotizing-enterocolitis

Kim, S. (2016, January 21). Necrotizing Enterocolitis.  http://www.healthline.com/health/necrotizing-enterocolitis#Outlook6

Necrotizing Enterocolitis. (n.d.). http://www.stanfordchildrens.org/en/topic/default?id=necrotizing-enterocolitis-90-P02388

Necrotizing Enterocolitis. (2016, February 19). https://en.wikipedia.org/wiki/Necrotizing_enterocolitis

Logo

Necrotizing enterocolitis community discussions will be posted here.

There are no new discussions. Start one now!!

Community Resources
Title Description Date Link

Clinical Trials


Cords registry

CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.

Enrolling is easy.

  1. Complete the screening form.
  2. Review the informed consent.
  3. Answer the permission and data sharing questions.

After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.

Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.

Visit sanfordresearch.org/CoRDS to enroll.

Community Leaders

 

Expert Questions

Ask a question

Community User List


Start a Community


Don't See Your Condition On Rareshare?

Start your own! With a worldwide network of 8,000 users, you won't be the only member of your community for long.

FAQ


Have questions about rareshare?

Visit our Frequently Asked Questions page to find the answers to some of the most commonly asked questions.

Discussion Forum

Logo

Necrotizing enterocolitis community discussions will be posted here.

There are no new discussions. Start one now!!


Communities

Our Communities

Join Rareshare to meet other people that have been touched by rare diseases. Learn, engage, and grow with our communities.

FIND YOUR COMMUNITY
Physicians

Our Resources

Our rare disease resources include e-books and podcasts

VIEW OUR EBOOKS

LISTEN TO OUR PODCASTS

VIEW OUR GUIDES

Leaders

Our Community Leaders

Community leaders are active users that have been touched by the rare disease that they are a part of. Not only are they there to help facilitate conversations and provide new information that is relevant for the group, but they are there for you and to let you know you have a support system on Rareshare.