Oral Aversion and eating difficulties

Oral aversion is defined as a sensitivity or fear of food, drink and/or other implements (toothbrushes for example) entering the mouth. This usually has its roots in infancy, and by adulthood the food and drink aspect has largely been managed successfully in those born with OA/TOF. However, some will still struggle with certain foods, drinks and textures due to oral aversion (rather than simply due to dysphagia) or will find instrumentation of the mouth (dentists, suction devices in other settings, NG tubes, endoscopy, tongue depressors) very difficult.

Those born with OA/TOF are at high risk of development of oral aversion in childhood. Many of the risk factors for oral aversion exist in those born with OA/TOF. These include the following:

• Intubation and suctioning post diagnosis and surgery in the NICU.
• Enteral feeding occurs in all born with OA/TOF post birth and repair, but is usually short term in short-gap OA. However, it can be for years in long-gap OA. Enteral feeding into the weaning period may cause the child to miss the ‘learning to eat’ cognitive window and also fulfils the child’s nutritional requirements so hunger doesn’t occur.
• GORD can make eating painful and the infant (and adult) brain may rightly link this with eating and make them unwilling to do so.
• Dysphagia and unsafe swallows lead to choking events and food bolus obstructions in children and adults.
• Forced medication – many born with OA/TOF have frequent medications in childhood, and this can mean another aversive experience to make sure this is given.
• Aggressive attempts to encourage oral consumption can produce negative feeding experiences and worsen the issue. (118)

Eating difficulties documented in children born with OA/TOF (95)

There is a wide body of research into eating difficulties found in children with OA/TOF. While we are lacking similar research in adults, some of these factors persist into adulthood and may limit the total intake of all food and/or intake of specific foods. This in turn impacts the nutritional status of adults born with OA/TOF. Eating difficulties identified in childhood that can still apply in adulthood include:

• Selective eating (avoiding hard-to-eat foods or foods that exacerbate GORD or are associated with prior choking episodes)
• Slow eating and lengthy meal times
• Regurgitation of food
• Food impaction
• Coughing and choking during meals
• Texture avoidance (119–122)

How may this present to healthcare professionals?

1. Nutrition and growth issues (see that section)
2. Oral aversion to toothbrushing and dentistry may lead to dental problems (see dental section)
3. Anxiety and/or avoidance of procedures involving instrumentalisation – a survey of adults born with OA/TOF revealed NG tubes, endoscopy, suction devices etc lead to post traumatic stress disorder (PTSD) symptoms of panic, anxiety, tachycardia in some individuals.