Hull MA, Fisher JG, Gutierrez IM, Jones BA, Kang KH, Kenny M, et al. Mortality and Management of Surgical Necrotizing Enterocolitis in Very Low Birth Weight Neonates: A Prospective Cohort Study. Journal of the American College of Surgeons. 2014;218(6):1148-55. This data is drawn from the Vermont Oxford Network of infants with a diagnosis of NEC. About 50% of the 17,000 infants required surgery, mortality prior to discharge was 30% among surgical cases, mortality among surgical cases was similar for the tiniest babies and for larger ones. Non-surgical NEC had a mortality that was greater among the smallest infants. The age at death is not reported, but prolonged hospitalization and delayed death do occur unfortunately in this group of babies.

Among 182 preterm infants at Great Ormond Street who had surgical NEC, 15 were too sick to go to ‘theater’ and had surgery in the NICU. Wright NJ, Thyoka M, Kiely EM, Pierro A, De Coppi P, Cross KMK, et al. The outcome of critically ill neonates undergoing laparotomy for necrotising enterocolitis in the neonatal intensive care unit: a 10-year review. Journal of Pediatric Surgery. 2014;49(8):1210-4.
They did not do well. 10 of them died within a few hours, another 2 died after prolonged NICU stays. Although this is a very small group, it suggests that if your reason for having surgery in the NICU is that you are too sick to move (rather than doing it in the NICU as a policy) then you should maybe consider if it is really a good idea.

Murthy K, Yanowitz TD, DiGeronimo R, Dykes FD, Zaniletti I, Sharma J, et al. Short-term outcomes for preterm infants with surgical necrotizing enterocolitis. J Perinatol. 2014. And from the Children’s hospitals neonatal consortium, a report of over 700 cases of surgical NEC, the babies were outborn (as it was from children’s hospitals) and were transferred for surgery. The study shows a hospital mortality of about 37% for the less mature babies (<28 weeks), and a little lower for the larger ones, 30%. Two additional outcomes, the frequency of short bowel syndrome was high at about 25% (it was defined as needing TPN for more than 90 days), but all except 2 of them were able to go home without TPN: Hospital stay tended to be very long for survivors, with a median of over 100 days, and a upper third quartile for the immature babies of 168 days. In other words a quarter of surgical NEC babies, <28 weeks, are hospitalised for 6 months or more. The total number of surgical procedures was over 2,800, or about 4 per patient, some were re-anastamosis of ostomies, only 124 had a single laparotomy.

These three very recent studies demonstrate quite clearly how serious surgical NEC is, and how important it is to continue to find ways to prevent it. Probiotics, even though they are effective, are by no means 100% effective.

They also give very clear data from very large groups which we can use to counsel parents. It is not a case of just going to the OR and taking out the sick bowel; starting surgical intervention for NEC often leads to prolonged TPN, prolonged hospitalisation, multiple further interventions, surgical and medical, and, of course, in the long term, reduced developmental and motor abilities.