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Long term outcomes of no gut syndrome in children - A multicentre study

Elena Cernat1, Susan Hill2, Rachel Wood3

  • 1Paediatric Gastroenterology Department, Leeds Teaching Hospitals NHS Trust, Leeds, UK.

Intestinal Failure (New York, N.Y.)
|February 6, 2026
PubMed

Insights

Children with No Gut Syndrome (NGS) are surviving thanks to parenteral nutrition advancements. Most attend school, demonstrating positive long-term outcomes and improved quality of life for these young patients.

Area of Science:

  • Pediatric Gastroenterology
  • Intestinal Failure Management
  • Parenteral Nutrition

Background:

  • Extreme short bowel syndrome, termed No Gut Syndrome (NGS), presents significant challenges for pediatric patients.
  • Advancements in parenteral nutrition (PN) and medical care have led to increased survival rates in children with NGS.

Purpose of the Study:

  • To describe the population characteristics of children diagnosed with NGS.
  • To evaluate the long-term outcomes for pediatric patients with NGS.

Main Methods:

  • A questionnaire was distributed to UK pediatric intestinal failure (IF) centers to identify patients with NGS on PN.
  • Inclusion criteria included infants and children under 18 with minimal remaining small bowel (duodenum plus up to 5 cm jejunum) and colon.
  • Follow-up data was collected two years post-recruitment.

Main Results:

  • Out of 379 home parenteral nutrition (HPN) patients across 19 centers, 14 (4%) were identified with NGS.
  • The primary etiologies for NGS were midgut volvulus (64%), bowel ischemia (22%), necrotizing enterocolitis (7%), and jejuno-ileal atresia (7%).
  • Most patients (93%) remained stable on PN, with one weaned after a small bowel transplant; 61% tolerated some enteral nutrition, and 79% were attending school.

Conclusions:

  • Improved PN and healthcare have enhanced long-term survival for children with NGS.
  • Pediatric NGS patients demonstrate positive long-term outcomes, including school attendance and participation in daily activities.
Abstract

Keywords:
Intestinal failureNo gut syndromePaediatricsParenteral nutritionShort bowel syndrome

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