Congenital hyperinsulinism is a rare condition characterized by unregulated insulin release from pancreatic beta cells, which can produce severe and unpredictable episodes of hypoglycaemia. Transient forms may occur with risk factors including perinatal stress, intrauterine growth restriction and maternal diabetes and often resolve within days or weeks, whereas genetic forms may result from a mutation in the insulin secretory pathway or from syndromes such as Beckwith-Wiedemann syndrome and tend to be persistent. The study examined children with genetically confirmed disease who had received a confirmed diagnosis between 2015 and 2025. Their management included diazoxide, surgical removal of a focal pancreatic lesion, subtotal pancreatectomy, octreotide or dasiglucagon, reflecting a range of disease severities and treatment pathways.

The children’s hospital admissions lasted between 58 and 211 days, an important feature of the context in which their feeding difficulties emerged. Many infants initially received intravenous fluids, parenteral nutrition or very small, scheduled oral feeds rather than uninterrupted opportunities to breastfeed or bottle-feed. Parents said that periods without oral intake, fasting, repeated blood-glucose checks and tightly controlled feeding schedules interrupted the establishment of typical feeding behaviours. One caregiver recalled that a child admitted for nearly four months was kept without oral intake for several weeks and was subsequently allowed only 10 to 15 millilitres every two or three hours. Another parent described prolonged hospitalization and repeated interventions as “blockers” that prevented the child from progressing with feeding.

Some parents believed that continuous glucose management also limited babies’ opportunities to experience hunger. Because blood glucose was monitored and maintained throughout the day, one parent said, the child did not develop the drive to feed that the parent associated with an ordinary baby. These accounts concern parents’ perceptions of how treatment affected feeding development; the study did not experimentally determine whether monitoring, fasting or any other medical factor caused a particular feeding outcome. It also could not separate the effects of hospitalization, repeated procedures, medication, tube feeding and close metabolic control. Nevertheless, the interviews show how clinically necessary interventions could alter the setting in which a child first learned to feed.

For many families, the practical demands continued after hospital discharge. Caregivers described learning to place and check nasogastric tubes, modify feeds, administer nutritional supplements and combine oral intake with pumped or tube-delivered nutrition. Some children received a nasogastric tube, while others had a percutaneous endoscopic gastrostomy; several continued enteral feeding alongside small amounts taken by mouth. The work was technically more demanding than these parents had anticipated for a newborn. Medication could also shape feeding: the article’s clinical background notes that diazoxide has an unpleasant taste and can cause vomiting and nausea, while octreotide can produce gastrointestinal dysmotility. The findings do not quantify the effect of any one treatment or establish which treatment was responsible for a child’s oral difficulties.

Oral feeding often progressed more slowly than families expected, and some children accepted less over time rather than improving with age. Parents reported gagging, vomiting, reduced bottle intake, refusal of new foods and prolonged dependence on enteral feeding. Some infants took a small amount by mouth and then needed the remainder delivered through a tube because blood glucose could not be allowed to fall. Other children stopped taking bottles before the usual transition to complementary foods. Caregivers described a persistent conflict between supporting development and protecting glycaemic stability: frequent prescribed feeds could leave a child too full to explore solids, while offering additional food raised concerns about vomiting or insufficient carbohydrate intake. “It’s trying to find a balance, but then unable to find a balance, because there’s no way,” one parent said.

Repeated unpleasant experiences also altered the emotional character of feeding. Several parents described anticipating distress before each feed, particularly when oral intake was followed by vomiting and further tube administration. One caregiver said the experience felt like force-feeding because the child had to receive the required amount to maintain blood glucose even when she resisted. Other parents reported anxiety, guilt or distress when they felt unable to distinguish ordinary infant refusal from a feeding decision with metabolic consequences. The study recorded these experiences through interviews and did not measure diagnoses of parental anxiety or depression, nor did it establish a causal pathway from individual feeding events to psychological outcomes. Its evidence is qualitative: the accounts show how clinical necessity and feeding development could pull families in opposing directions.

Across the interviews, glycaemic control became the main reference point for feeding decisions. Parents said they could not treat a missed feed with the same flexibility they had applied to other children, because maintaining the prescribed intake was necessary in CHI. Hunger, fullness and the infant’s willingness to eat therefore carried less weight in some decisions than the need to secure adequate nutrition for glucose stability. One parent explained that baby-led weaning was not compatible with the requirement that the child consume food because low blood glucose was possible otherwise. Continuous glucose monitoring was not raised spontaneously as a focus during the interviews, so the researchers did not speculate about how its use affected feeding management or caregiver wellbeing. The reported findings likewise do not quantify how often glycaemic control overrode infant cues.

The consequences of feeding extended well beyond individual meals. Families said leaving home required advance planning for milk, feeding pumps, medication, spare tubes and supplies for flushing or replacing lines. One caregiver described the preparation needed even for a trip to a shop, while others avoided public settings because of tube feeding, vomiting or unwanted attention. Some consequently stopped attending parent-and-infant groups and reduced social contact. The emotional burden included constant checking, anxiety about impending hypoglycaemia and uncertainty about the child’s future relationship with food. One participant became tearful when asked about the effect of feeding difficulties on family life and said, “I don’t think I want to look at that yet.” The interviewer did not pursue that topic further in order to respect the participant’s wellbeing.

The authors interpret the results as support for coordinated multidisciplinary care involving paediatric endocrinology, specialist nursing, dietetics, speech and language therapy and psychological support. They also emphasize education for healthcare teams outside specialist CHI services, noting that parents sometimes felt responsible for repeatedly explaining their child’s condition. This is a call based on participants’ experiences, not evidence that a particular programme has already been shown to improve feeding or family wellbeing. Recruitment was exploratory: 18 of 38 eligible families were invited, four declined, four could not be contacted and 10 completed interviews. The researchers used reflexive thematic analysis without statistical power calculations or a claim of data saturation. As the sample came from one centre and consisted of children with confirmed genetic CHI, milder forms may have been underrepresented, while feeding practices and support systems may differ in other healthcare settings. The study identifies experiences and service needs that require further evaluation; it does not establish how common these experiences are or demonstrate the effectiveness of an intervention.

Subject of Research: Caregiver experiences of feeding infants and children with congenital hyperinsulinism

Article Title: Parent experiences of infant feeding in congenital hyperinsulinism: a thematic analysis

Article References: Worthington, S., Ginbey, E., Otabor, O., Hall, C., Allchin, B., Auckburally, S. H., Salomon-Estebanez, M., Banerjee, I., & Worth, C. (2026). Parent experiences of infant feeding in congenital hyperinsulinism: a thematic analysis. Frontiers in Endocrinology, 17, Article 1955679. https://doi.org/10.3389/fendo.2026.1955679

Image Credits: AI Generated

DOI: 10.3389/fendo.2026.1955679

Keywords: congenital hyperinsulinism, infant feeding, feeding aversion, hypoglycaemia, enteral feeding, glycaemic control, parental stress, qualitative research, multidisciplinary care, family wellbeing, Parent, experiences