From the Swallowing Reflex to Family Mealtimes

Abstract

Children with EA cannot drink immediately after birth and require surgical treatment. Delayed initiation of oral feeding and (recurring) structural problems can lead to acceptance issues and challenges in eating development. In addition to evaluation of the esophagus, it is essential to examine the larynx and lower respiratory tract. Speech therapy/pediatric swallowing therapy and, if necessary, an imaging swallowing examination (e.g., FEES) are important to determine the nature of the swallowing problem, especially if aspiration is suspected. A child- and family centered, cue-based approach is central to all eating/drinking interventions. Children should learn to eat independently. For children who experience “stickies”, individual trial and error–e.g., drinking after eating, using movement–helps as long as there is no acute danger. With good oral motor development, therapy in the narrower sense is often not necessary. Regarding swallowing and eating development, it is important to thoroughly evaluate eating in relation to developmental milestones and to provide continuous and needs-based counselling to families – ideally from birth.

Keywords

eating development - evaluation - larynx - FEES - eating and feeding therapy

Swallowing Problems in Children Born with Esophageal Atresia

Until surgical repair, children born with esophageal atresia cannot drink, i.e. breast- or bottle-feeding is not possible. In addition, many children have an abnormal connection, a fistula, between the trachea and esophagus, which carries an additional risk of aspiration, i.e. secretions, saliva, milk and stomach contents passing into the lower airway. The initiation of oral feeding is dependent upon successful surgical repair. If repair is delayed for weeks or even months after birth, so too is the initiation of breast- or bottle-feeding. A delayed introduction to drinking can lead to difficulties in acceptance. The lack of experience makes the processes of sucking and swallowing more susceptible to coordination difficulties or sensory processing difficulties which can lead to coughing or milk refusal. In addition, abnormal esophageal peristalsis and the development of narrowing/strictures can lead to slow esophageal bolus transit or bolus obstruction, often called “stickies”. The entire eating/drinking development is therefore more vulnerable than in children without EA and the caregivers are often anxious about their childʼs swallowing.

What Needs to be Checked?

As part of the initial diagnosis of esophageal atresia, the larynx and trachea should be assessed using rigid endoscopy to rule out upper and lower airway abnormalities, such as tracheomalacia and laryngeal cleft. A laryngeal cleft is a congenital malformation of the posterior larynx which creates a connection between the larynx/trachea and esophagus. Undetected, it leads to chronic aspiration during swallowing. Unfortunately, even today, routine endoscopy by ENT colleagues is not standard practice in all operating centres, resulting in missed diagnosis.

As such, referral to an appropriate specialist centre should be initiated for children with frequent coughing or choking episodes associated with eating and drinking. If swallowing problems (re)occur, the first point of contact is often the pediatric surgeon providing treatment and follow-up care. Consider esophageal and oro-pharyngeal causes of eating/drinking difficulties and their underlying aetiology (e.g. GOR, dysmotility, stricture, recurrent TOF, swallow-respiratory incoordination due to tracheomalacia laryngeal cleft, VCP, oro-motor difficulties, sensory based feeding difficulties etc.). If oro-pharyngeal swallowing difficulties are suspected, instrumental swallow assessment should be undertaken, such as FEES (fibreoptic evaluation of swallowing) or VFSS (videofluoroscopy swallow study). If aspiration events are seen or an increased risk of aspiration are suspected, further assessment is necessary to determine the underlying cause of the aspiration. A rigid endoscopy under anesthesia (ideally performed jointly by pulmonology, ENT and pediatric surgery) with the question of re-fistula or laryngeal cleft is recommended.

How Can Children with EA Learn to Enjoy Eating and Swallow Safely?

A cue-based, child-centered approach has proven successful for the development of eating and drinking, from sucking to chewing. This means that the infant, and later the toddlerʼs, feeding cues are observed and taken seriously. Such cues include hunger and satiation cues and signs of distress or discomfort with feeds/mealtimes adjusted to promote positive experiences for the child and parent/caregiver. With older children, the focus is not only on basic autonomy for eating, but also on good self-awareness regarding possible problems. The more autonomy children experience while eating and drinking, the quicker they will develop appropriate coping and adaptation strategies and enjoy mealtimes.

Occasional gagging or coughing is perfectly normal when children are learning to eat independently. Food preferences are also not unusual. However, EA children have altered esophageal peristalsis, which can lead to slower movement of food into the stomach or bolus obstruction. These are the so-called “stickies”. In addition to close observation to determine whether they need specific treatment, these children also need to develop self-management skills. Unless there is an acute danger, “trial and error” applies here. This means that the children and families are encouraged to try to find out what promotes the passage of food. The most commonly used adaptations are frequent water drinking while eating, chewing food well and eating more slowly and avoiding very challenging foods (such as some types of meat and bread). The rule here is: what helps is good.

For some children, esophagus-related problems may co-occur with dysphagia arising from the oral or pharyngeal phases of swallowing. These children have difficulty preparing food in the mouth or closing the airway securely during swallowing. This manifests itself in various symptoms. Such symptoms require clinical examination, often by a speech and language therapist, and instrumental assessment of swallowing if pharyngeal difficulties are suspected (see “What needs to be checked”).

Professional Support for Eating Development

Experience shows that children with EA and their families benefit from professional support with swallowing and eating development right from the start. This involves the assessment of dysphagia and initial counselling. The form of dysphagia or the affected phase and the clinical signs also inform the need for further swallowing therapy. If oral-motor development is good, therapy in the narrower sense is often not necessary. However, support to achieve developmental eating/drinking milestones through continuous and needs-oriented counselling of the families ensures mealtimes are safe, enjoyable and nutritionally sufficient for growth. Ideally, the children are referred to speech therapy during their initial hospital stay and the parents are supported before discharge. This reduces anxiety and ensures that the need for therapy is reviewed individually. Counselling for all families should cover areas such as dietary adjustments, expanding the food repertoire, safe consistencies and meal planning or playful promotion of oral motor skills in everyday life. Where required, targeted swallowing therapy can address specific elements of dysfunction, depending on the childʼs age.

The expertise of swallowing therapists in the outpatient sector in relation to rare diseases is very heterogeneous. Of course, this also applies to esophageal atresia. This can lead to therapists feeling insecure. KEKS NEST, the network for eating and swallowing therapists, has therefore been in place since 2023 to support healthcare providers in the field of pediatric swallowing therapy. In this joint project between KEKS e. V. and the Department of Pediatric Surgery of the Dr. von Hauner Childrenʼs Hospital at LMU Hospital Munich, therapists meet online four times a year to strengthen the treatment of children with esophageal atresia (close to home) by sharing knowledge and experience as well as discussing cases. The project is managed by Sandra Bergmann (LMU Klinikum) and Julia Seifried (KEKS e. V.) in terms of content and organization. Interested parties can register informally or find out more at [e-mail]

Summary

Children with EA cannot drink after birth and require surgical treatment. Often there is an abnormal connection between the trachea and esophagus (fistula), which increases the risk of aspiration. Delayed initiation of drinking can lead to acceptance problems and an increased susceptibility to swallowing disorders. Later, abnormal peristalsis or narrowing at the anastomotic site may result in food “sticking”. It is important that the larynx and trachea are also examined carefully to rule out laryngeal cleft, as this can lead to chronic aspiration. Instrumental swallowing examinations such as FEES (Flexible Endoscopic Evaluation of Swallowing) are useful to detect and treat aspiration.

A child-centred, cue-based approach is key. Children should learn to eat in a self-determined way. Individual trial and error – e.g. re-swallowing, exercise – can help with stuck food as long as there is no acute bolus obstruction. Difficulties at the oral and pharyngeal swallowing phases (e.g. lack of airway protection) should also be considered with targeted assessment and therapy as necessary.

Professional support from specialists, such as speech therapists, is essential to support eating development, reduce anxiety and develop individual strategies. The aim is to strengthen childrenʼs autonomy and support their eating and swallowing skills in the best possible way.

Conflict of Interest

The authors declare that they have no conflict of interest.

• Literatur/References

• 1 Aswathanarayana C, Wilken M, Krahl A, Golla G. Diagnostik und Therapie von Schluck- und Fütterstörungen bei Säuglingen und Kleinkindern: Eine interdisziplinäre Aufgabe. Sprache Stimme Gehör 2010; 34: 12-17
• 2 Bartolome G, Schröter-Morasch H. Hrsg. Schluckstörungen. Diagnostik und Rehabilitation. 5. Aufl.. München, Jena: Elsevier; 2014
• 3 Biber D. Frühkindliche Dysphagien und Trinkschwächen. Leitfaden für Diagnostik, Management und Therapie im klinischen Alltag. Wien, New York: Springer; 2012
• 4 Coppens CH, van den Engel-Hoek L, Scharbatke H. et al. Dysphagia in children with repaired oesophageal atresia. Eur J Pediatr 2016; 175: 1209-1217
• 5 Chatoor I. Fütterstörungen bei Säuglingen und Kleinkindern. Diagnose und Behandlungsmöglichkeiten. Stuttgart: Klett-Cotta; 2012
• 6 Frey S. Pädiatrisches Dysphagiemanagement. Eine multidisziplinäre Herausforderung. München: Elsevier Urban & Fischer; 2011
• 7 Genz B. Pädiatrische Dysphagien. Theorie und Therapie von Schluckstörungen bei Säuglingen und Kleinkindern. Köln: ProLog; 2016
• 8 Menzies J, Hughes J, Leach S. et al. Prevalence of Malnutrition and Feeding Difficulties in Children With Esophageal Atresia. J Pediatr Gastroenterol Nutr 2017; 64: e100-e105
• 9 Serel Arslan S, Demir N, Karaduman AA. et al. Assessment of the Concerns of Caregivers of Children with Repaired Esophageal Atresia-Tracheoesophageal Fistula Related to Feeding-Swallowing Difficulties. Dysphagia 2020; 35: 438-442
• 10 Shaker C. Reading the Feeding. ASHA Leader 2013; 18: 42-47
• 11 Stewart A, Smith CH, Govender R. et al. Parentsʼ experiences of feeding children born with oesophageal atresia/tracheo-oesophageal fistula. J Pediatr Surg 2022; 57: 792-799

Publication History

Article published online:
10 October 2025