NEC is a difficult disease to learn about: it occurs mostly in premature infants, has no ‘adult’ or ‘older childhood’ equivalent disease and occurs unpredictably and suddenly. We know that research improves care and outcomes for preterm infants, and we can learn about why some babies get NEC from their stool, urine, blood and tissue (if they needed surgery). However sampling specifically for research is difficult in these tiny patients, particularly at or around the onset of disease, when parents and staff are focused elsewhere, but these are potentially the samples we most need to begin to unlock mechanisms contributing to NEC. We have set up the GNNB, a collaboration between Newcastle University and Newcastle Upon Tyne Hospitals to help collect and store these precious samples, and make them available to scientists to learn about NEC. We ask parents permission to keep things that would normally be thrown away: stool, urine, residual blood from routine tests, tiny amounts of breast milk left in syringes over the time they are in our neonatal unit. This means that if NEC occurs we already have the samples from whilst the NEC was ‘developing’ but the baby was well, and can supplement this with tiny pieces of gut tissue if a baby needs an operation for NEC. From these samples we are able to explore patterns of gut bacteria, how the bacteria produce substances that affect the gut (their ‘metabolism’), the baby’s immune system and response to different challenges, and the impact of how we care for our preterm babies on all of these. We have teams of expert scientists in all these areas working on these areas now, and learning about NEC, with the hope of being able to prevent it.
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