NEC: a quick guide for families.
What is NEC?
Necrotizing enterocolitis (NEC) is a serious disease that affects the intestines (bowel) of newborn babies. The more preterm a baby, the higher seems to be the risk of NEC. It is very rare in babies born at term.
Necrotizing refers to the death of cells and tissue and enterocolitis means inflammation of the intestines.
NEC can happen suddenly when a baby had been doing well and the baby may deteriorate quickly.
Babies do not catch NEC from other babies.
What are the symptoms?
The biology of babies’ immature intestines is complex and NEC is difficult to diagnose in its early stages. There is no easy, single test. Severe cases are rare and unpredictable. NEC is suspected more frequently than it actually occurs.
The earliest symptoms include the inability to keep down feeds, increased apnoeas and bradycardias, low blood pressure and temperature changes. However, these are also signs of generalised illness and infections.
A combination of findings provides the most accurate diagnosis, but only a surgical procedure can confirm it is NEC. This would also confirm whether or not it is another serious bowel condition called spontaneous intestinal perforation (SIP).
Some specific findings in a baby with NEC are:
- swelling, tenderness and discolouration of the tummy
- blood in the stool
- increased aspirates from the nasogastric (NG) tube
- bringing up bile (a green fluid)
- gas in the bowel wall shown on X-rays
What if it is NEC?
If X-rays, blood tests and a baby’s condition lead to the strong suspicion that it is NEC, the clinical team will treat the baby for ‘medical NEC’. This means stopping milk feeds for 5-14 days and resting the bowels. The baby is given nutrients and antibiotics directly into a vein (intravenously or “a drip”), and supported to breathe when necessary.
If the baby improves and is given milk feeds again, it is best to use breast milk. This is because recovering babies tolerate milk from their mum, or a donor, better than formula. If breast milk is not tolerated, a special, simpler milk may be tried.
Most babies treated in this way do not have any further concerns or long-term effects.
In severe cases, babies require intensive care and a decision may be made to operate.
Babies who need surgery for NEC may have multiple operations and a stoma to allow the contents of the bowel to be collected outside the body for a temporary period. Infants who have required surgery for NEC may have difficulties in establishing full feeding, may not tolerate usual milk, and may not have enough length of healthy intestine left to allow appropriate nutrient absorption in the long-term. This is called short bowel syndrome. They may also experience developmental difficulties and have cerebral palsy.
Unfortunately, some babies with severe NEC may be too ill for surgery to be attempted. Some babies may not survive surgery and some babies may die after an operation. NEC can strike suddenly, develop rapidly and death can occur within 48 hours.
NEC is the leading cause of death from gastrointestinal disease in premature babies, but it is rare. Researchers in the UK have estimated that it occurs in 109 out of 100,000 live births and that approximately 1 in 4 babies diagnosed with NEC will require surgery. In North America, it is estimated that NEC affects babies at a rate of 1-3 per 1,000 births.
For more detailed information, see the other parts of our For Families section.
