Necrotizing Enterocolitis: An investigative jou rney

We have significantly evolved our understanding of NEC over the past decades, yet outcomes
for affected infants and their families continue to be devastating. In this thesis, we aim to
contribute to unraveling the clinical course of the disease by mapping contemporary outcomes
in Dutch NICUs and searching for factors associated with adverse outcomes. We also explore
new strategies for earlier diagnosis and potential prevention, and investigate previously
undescribed long-term consequences, such as surgical scarring and its impact on quality of life.
This investigative journey began with an in-depth analysis of our own Dutch cohort. In Chapter
2 we provide an overview of contemporary single-center incidence and outcomes, laying the
foundation for the subsequent chapters. This work led to a lasting collaboration between
neonatologists, pediatric surgeons, and researchers from three academic centers. Combining
data across centers strengthened our findings and enabled the development of multiple
studies, presented in Part I, which focuses on short-term surgical outcomes. Chapter 3
describes the multicenter data on outcomes specifically for the youngest infants – those born
at 24 and 25 weeks of gestation. In Chapter 4, we investigate risk factors associated with
postoperative mortality. Chapter 5 examines factors linked to postoperative complications.
Despite these insights, clinical challenges in disease prevention, diagnosing and subsequent
timing of intervention remained substantial. This prompted further research into practical
tools to support clinical decision-making, presented in Part II. Chapter 6 explores the value of
the biomarker interleukin-6 as a potential early warning signal, analyzed at the first moment
disease is suspected. A large multicenter study evaluating the role of probiotics as preventive
strategy is presented in Chapter 7. Following the in-depth analysis of our cohort, we initiated
of a structured follow-up program at our hospital. It became increasingly clear that NEC
survivors require structured long-term follow-up, similar to the care provided for children
with congenital anatomical anomalies. 65 Within this multidisciplinary program, we observe
not only the medical consequences, but also the psychosocial impact of NEC. This led to
Part III, which addresses long-term outcomes, specifically focusing on surgical scarring in
school-aged children. In Chapter 8, we explore scar perception and its impact on quality of
life following neonatal surgery. Building on this foundation, Chapter 9 focuses on scar-related
outcomes specifically after surgery for NEC. These insights underscore the importance of a
holistic approach to NEC care – one that extends well beyond the neonatal period. To conclude,
Part IV summarizes the findings of this thesis, places them in a broader clinical and scientific
context, and offers directions for future research (Chapters 10 and 11).