Long term outcomes

If NEC destroyed a large proportion of the intestines, the baby may suffer long-term damage to various parts of the body. Massive bowel resection for necrotizing enterocolitis is the most common cause of short bowel syndrome (SBS), which occurs when there is not enough of the small bowel to absorb all the nutrients in food. This can necessitate long-term parenteral nutrition (TPN) and also lead to liver damage. In rare situations, this can mean that a transplant is needed.  The only study¹ of babies born in the UK and Ireland who needed surgery for NEC found that, after one year, 12 patients still needed TPN,  1 required a liver transplant and 3 had not left hospital.

Clinicians are increasingly aware of the neurodevelopmental impairment in children who had severe NEC. However, there is not a large body of research in this area. This is partly due to the lack of reliable shared data, and there is also a need for more parents to participate in research and to bring their children to follow-up appointments.

In the UK, EPICure² is a series of studies of survival and later health among babies and young people who were born at extremely low gestations (from 22 to 26 weeks). In studying NEC survivors³,they found that 20% had cerebral palsy; 35% had low developmental scores and there was a 60% increase in the rate of neuro-impairment.

In the United States, a recent research paper⁴ included the following data on complications and outcomes in patients with NEC, which was sourced from multiple studies: