On Tuesday 17 May the exterior facade of the Library of Birmingham will be lit up blue and green in support of World NEC Awareness Day 2022.

The NEC Society website states:

Necrotizing enterocolitis is a devastating intestinal disease that affects vulnerable infants during their first weeks and months of life. Up to 50% of the babies who get NEC will die, and survivors often face life-long health challenges. Yet few people outside of the NICU have even heard of the disease.

Throughout May, we will elevate the conversation around NEC and expose the scars, the trauma, and the stillness that come after a NEC diagnosis. Our goal is to empower families and stakeholders to join the international community that’s working to build a world without NEC.

For many families, the first time they learn about necrotizing enterocolitis (NEC) is when their baby has very suddenly become ill with a distended abdomen, bloody stools, and episodes of apnea (not breathing) and bradycardia (low heart rate). The word “necrotizing” means the process of tissue death and the word “enterocolitis” means inflammation of the small intestine or colon. There is really no other disease quite like it in which large sections of the intestines become necrotic and die. NEC is common and can be fatal. It is mostly a disease of premature babies, and the most common cause of death in very premature infants after two weeks of age. NEC usually strikes very suddenly and can progress rapidly. It is a complicated disease and is best understood by categories:

1. Classic NEC: this is the most common presentation of NEC. A premature infant (most commonly born less than 28 weeks) is 3-6 weeks old and stable, and then within hours develops signs of NEC: a hard distended abdomen that feels like a bowling ball, bloody stools, decreased activity, apnea, bradycardia, low platelet count, and an X-ray with a very characteristic appearance. Sometimes the baby has some mild symptoms like lethargy and poor feeding for a day or two beforehand, but usually there is little or no warning. Some studies have shown that days before the onset of classic NEC, the intestine becomes colonized with large numbers of a certain kind of bacteria that is known to cause inflammation.
2. Transfusion-associated NEC: about 1/3 of all NEC cases occur in a premature infant within 2 or 3 days after a blood transfusion. It appears that the combination of severe anaemia and a transfusion is particularly risky.
3. NEC outbreaks: there are reports in the scientific literature of clusters of cases of NEC in which several premature babies in the same NICU get NEC in a short time period, sometimes with evidence of the same bacteria or virus in each baby. Some of these outbreaks have been related to contaminated infant formula or germs that are commonly found in hospitals. These outbreaks are uncommon.
4. Atypical NEC: sometimes NEC presents in an unusual fashion. For instance, it is not typical for NEC to occur in the first week of life or before a baby has been fed.
5. Term infant NEC: the risk of NEC in a baby born at term (37-41 weeks) is about 1 in 10,000. Most term babies with NEC have one of the following: a birth defect involving the heart, a birth defect of the intestines called gastroschisis, or an episode of low oxygen that may occur before or during a difficult birth.

What causes NEC?

The best explanation is some kind on injury to the lining of the intestine that then allows bacteria to travel into the bloodstream.

Can NEC be prevented?

While we cannot eliminate the risks of NEC, the following appear to be helpful in decreasing the risks of NEC:

• Avoiding the overuse of antibiotics and acid-blocking agents
• Feeding of breast milk
• Administration of certain probiotics

Is there any treatment for NEC?

Standard treatment for NEC is to stop all feedings, place a large tube through the mouth into the stomach to keep the stomach empty, start antibiotics, and check x-rays of the abdomen at regular intervals. If the baby has signs that the intestine is severely injured, surgery is necessary to remove the dead portion of the intestine.

Full details can be found on the NEC UK website.

Article posted 16 May 2022