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Faltering Growth in Cleft Lip/Palate: How Far Have We Come?
Nitisha Narayan1,2,3, Amy Davies2, Cathy Marsh1
1Southwest Cleft Service, University Hospital Bristol and Weston NHS Trust.
Insights
Faltering growth (FG) affects 29% of infants with cleft lip and/or palate (CLP). Centralized cleft services and early interventions have significantly reduced FG in syndromic cases, suggesting improved outcomes for children with CLP.
Area of Science:
- Pediatric surgery
- Growth and development
- Craniofacial anomalies
Background:
- Faltering growth (FG) is common in infants with cleft lip and/or palate (CLP), often linked to feeding difficulties.
- Previous studies indicated high FG rates (e.g., 43.3% in palatal clefts) before UK cleft service centralization.
- Anticipation of reduced FG levels post-centralization and early intervention by cleft nurse specialists.
Purpose of the Study:
- To determine the prevalence of FG in infants with CLP after service centralization.
- To compare current FG rates with pre-centralization data.
- To analyze FG variations based on cleft type and syndromic status.
Main Methods:
- Utilized data from the Cleft Collective longitudinal cohort study.
- Defined FG according to National Institute for Health and Care Excellence (NICE) guidelines.
- Compared FG prevalence using chi-squared tests and logistic regression against historical data (Pandya and Boorman, 2001).
Main Results:
- FG prevalence was 24% (NICE guidelines) and 29% (failure-to-thrive category).
- Infants with cleft palate (CP±L) showed a 3.3 times higher likelihood of FG compared to isolated cleft lip.
- A 78% decrease in FG odds was observed for syndromic/PRS cases post-centralization.
Conclusions:
- The study confirms a 29% prevalence of faltering growth in the Cleft Collective cohort.
- Moderate evidence suggests reduced FG odds in syndromic/PRS cases over 20 years.
- Centralization of services and early nurse specialist intervention are likely drivers of improved FG outcomes.
Background:
Faltering growth (FG) in infants with cleft lip and/or palate (CLP) is common, largely due to challenges in early feeding. Several single-center studies have looked at FG in CLP, predominantly before the Clinical Standards Advisory Group (CSAG) report. One such study reported FG in 43.3% of palatal clefts (CP±L). Since the centralization of cleft services in the UK and early intervention by cleft nurse specialists, the authors would expect decreased levels of FG.
Aim:
Explore the prevalence of FG in infants with CLP and compare the results with data precentralization.
Methodology:
Data from the Cleft Collective, a longitudinal cohort study, were used to describe FG postcentralization. FG was determined according to NICE definitions. Prevalence of FG precentralization was taken from Pandya and Boorman (2001). A χ 2 test and logistic regression were used to compare FG between cleft type and pre- and postcentralization.
Results:
Data were available for 153 participants. In the sample, 24% of children were considered to have faltering growth as per NICE guidelines, and 29% of children were considered to fall within the failure-to-thrive category as per the Pandya and Boorman (2001) paper. Moderate evidence was found to suggest infants with CP±L were 3.3 times more likely to have FG than infants with an isolated cleft lip. When adjusting for the presence of a syndrome and/or PRS, the odds were reduced slightly but still showed an increase in the odds of faltering growth in children born with CP±L compared with cleft lip only. Little evidence was found to suggest a difference in FG pre- and postcentralization for CP±L; however, moderate statistical evidence was found to suggest a 78% decrease in the odds of FG for children born with a palatal cleft and diagnosed with syndrome and/or PRS postcentralization compared with precentralization.
Conclusion:
This study concludes that the prevalence of faltering growth within our sample is 29%, based on data from the Cleft Collective cohort, as per the latest guidelines published by NICE. There is moderate evidence to suggest that the odds of faltering growth in children born with cleft palate and a diagnosed syndrome or Robin sequence have reduced over the last 20 years, and this is likely due to the centralization of cleft services and early intervention of cleft CNSs.

