Introduction

There is a significant knowledge gap in management of infants with gastroschisis. This  includes optimal surgical and feeding management, antibiotic use and indication, sedation practice, respiratory management, etc. Since this is a rare disease, individual centers don’t have volume to adequately study the impact of patient-level factors on outcomes. With lack of standardized protocols, management varies across sites affecting the ability of any one site to determine an optimal management strategy.

The Gastroschisis focus group was one of the original groups started within CHNC.  After a brief hiatus, the group resumed meetings in its current form led by Elizabeth Jacobson (Seattle Children’s) and Stefanie Riddle (Cincinnati Children’s). Our participants share broad and varied interests within the topic of gastroschisis, and include pediatric surgeons, neonatologists, clinical and research nurses, and others. Since re-invigoration in 2018, this group has had multiple abstract presentations at national meetings, including Pediatric Academic Societies, with numerous publications in pertinent neonatal and perinatal journals.

Mission & Goals

To improve outcomes for infants born with gastroschisis by adding to the existing knowledge base through research initiatives and by encouraging and facilitating quality improvement efforts.

Goals/Aims

• Understand associations of infant-specific factors and management strategies with outcomes and use that data to improve our ability to risk stratify infants at higher risk of complications, prolonged lengths of stay, and poor enteral tolerance.
• Add to the body of literature on gastroschisis using the CHND and surveys from member hospitals
• Determine Potentially Better Practices by assessing site/practice management variation and association with outcomes
• Facilitate standardized data capture to improve gastroschisis-related data in CHND

Accomplishments

Abstracts at national meetings:

• Riddle S, Karpen H, Sullivan K, Zaniletti I, Jacobson E, on behalf of CHNC Gastroschisis Focus Group. Gastroschisis and low incidence of early inset infection: a case for antimicrobial stewardship? Accepted for presentation at Pediatric Academic Societies, 2020; Poster (meeting canceled).
• Riddle S, Karpen H, Sullivan K, Zaniletti I, Jacobson E, on behalf of CHNC Gastroschisis Focus Group. Gastroschisis and low incidence of early onset infection: a case for antimicrobial stewardship? Accepted for presentation at Pediatric Academic Societies Virtual Meeting, Phase 1, 2021; e-Poster with Chat Q&A.
• Riddle S, Acharya K, Ahmad I, Agarwal N, Bendel-Stenzel E, Karpen H, Shepherd J, Williams S, Zaniletti I, Jacobson E, on behalf of CHNC Gastroschisis Focus Group. Gestational age at delivery and neonatal outcomes among infants with gastroschisis in the Children’s Hospital Neonatal Consortium. Accepted for presentation at Pediatric Academic Societies Virtual Meeting, Phase 1, 2021; e-Poster with Chat Q&A.
• Jacobson E, Bendel-Stenzel E, Agarwal N, Karpen H, Nayak SP, Rajgarhia A, Shepherd J, Riddle S, and the CHNC Gastroschisis Focus Group. “Variation in Management of Patients with Gastroschisis: Cross-Sectional Survey Assessing Care in Quaternary NICUs.” Poster presentation at the Children’s Hospitals Neonatal Consortium Annual Symposium, October 2022, Indianapolis, IN.
• Pugh P, Zaniletti I, Miquel-Verges F, Nghiem-Rao H, Downey LC, Hightower H, Riddle S, Acharya K, and the CHNC Gastroschisis Focus Group. “Gastroschisis Outcomes in Infants Born Prior to 32 Weeks Gestation: Examining a Multi-Institutional Cohort.” Poster Presentation, Pediatric Academic Society Meeting, April 2023, Washington DC.
• Stangeby M, Gowda S, Huff K, Itriago E, Jacobson E, Ling CY, Miquel-Verges F, Nayak SP, Nghiem-Rao H, Pugh P, Riddle S, Shakeel F, Welch C, Piazza A, Bashaw H, Karpen H; on behalf of the CHNC Gastroschisis Focus Group. “Incidence and Degree of Growth Failure Among Infants With Gastroschisis: A Multicenter Study.” Poster Presentation, Children’s Hospitals Neonatal Consortium Symposium, October 2023, Denver CO.

Current Projects

• Prematurity and gastroschisis
• Gastroschisis and congenital heart disease
• Nutrition and growth in gastroschisis