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Fighting Necrotising Enterocolitis (NEC)

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What is NEC?

Necrotising enterocolitis (NEC) is a devastating bowel disorder that mainly strikes premature babies. The wall of the intestine is invaded by bacteria, which cause local infection and inflammation that can ultimately destroy the wall of the intestine.

Medical staff must be constantly on the lookout for symptoms of NEC, as premature babies in neonatal units can develop the disease at any time, with little or no warning. Difficulties with diagnosis mean NEC is often identified late, when a baby is already extremely ill. No test can reliably identify babies in the early stages of the disease.

Small baby with NEC in incubator

Babies who develop NEC may need emergency surgery to remove damaged parts of their intestines. Up to half of babies who survive the disease develop health problems. Some fail to put on weight properly, they can develop serious infections and liver damage, and nutritional problems can mean they have to be fed through a tube that goes directly into their bloodstream. Babies can also develop significant hearing, vision and movement problems. NEC remains a threat to premature babies. Improved diagnosis and treatment are urgently needed which is why Action is funding vital research into NEC, but COVID-19 is putting vital research like this at risk.

Please help us continue to fight for babies and children’s lives – now and always.

Protecting preterm babies from life-threatening illnesses

The causes of necrotising enterocolitis (NEC) and late onset infections in babies are not well understood, but both are thought to be linked to an ‘imbalance’ in the baby’s gut bacteria.

Breast fed babies are less likely to develop these serious complications. The research aims to develop a better understanding of the causes of NEC and infections which could help doctors identify babies most at risk of poor outcomes. And in the longer term, this work could lead to improvements in neonatal care and treatment to promote a healthy gut and protect preterm babies from life-threatening illness.

Dr Darren Smith and his team at University of Northumbria in Newcastle are investigating how breast milk exerts its protective effects, and in particular, if it helps preterm infants develop a healthy range of gut bacteria.

Elijah's story

Jenny bravely tells the story of her son Elijah, who was born extremely prematurely at 25 weeks and three days, weighing just 823g – less than 2lbs – and, sadly, lived for just 37 days.

At first, Elijah seemed to be doing well, but things changed suddenly when he developed the devastating bowel condition NEC.

Elijah endured urgent surgery to remove 82cm of his intestines which NEC had destroyed. Sadly, he was left with a condition called short bowel syndrome. He also suffered severe brain damage and Jenny and husband James had to make the heartbreaking decision to move him from intensive care to palliative care.

Elijah's is just one story

Elijah's is just one story

Around 60,000 babies are born prematurely each year in the UK. Read more stories in our gallery, or share your own and help show others they are not alone.