CHARGE syndrome: eating and drinking difficulties

This page is about eating and drinking difficulties commonly experienced by children with CHARGE syndrome.

It covers the types of behaviour and their risks, and how various features of CHARGE, as well as early medical interventions, can cause specific difficulties.

You’ll also find a brief overview of approaches taken by occupational therapists and speech and language therapists to manage eating and drinking difficulties.

Sections on this page

How common are eating and drinking difficulties with CHARGE syndrome?

Studies suggest that as many as 80–90% of children with CHARGE syndrome have great difficulty eating and drinking.  

Behaviours can include:

  • Refusing food.
  • Gagging.
  • Holding breath.
  • Holding food in the mouth.
  • Forcing food out of the mouth.

These difficulties can lead to risks of:

  • Dehydration and malnutrition.
  • Food going down the wrong way into the airway.
  • Choking.
  • Infection.
  • Delayed development of eating and drinking skills.

Why do children with CHARGE syndrome have difficulty eating and drinking?

Children with CHARGE syndrome have difficulties eating and drinking because of many features of the condition and some related early treatments.

See our full definition of CHARGE syndrome.

Below, we’ll look at the specific causes of eating and drinking difficulties related to CHARGE syndrome.

Cranial nerve problems

The cranial nerves are a set of 12 paired nerves in the back of the brain that send electrical signals between the brain, face, neck and torso. 

They help us taste, smell, hear, feel sensations, make facial expressions, blink and move our tongues.

Smell

Smell plays an important part in taste.

Lack of smell affects your child’s developing taste system, makes food less appealing and so hinders the development of normal eating and drinking behaviours. 

Lack of smell also affects infant and mother bonding.

Weak suck/poor chew

Poor muscle and sensory control lead to chewing and swallowing difficulties. 

Gastro-oesophageal reflux

Gastro-oesophageal reflux is when acid from the stomach leaks up into the oesophagus (gullet).

Apart from the physical difficulty this causes, it can also turn mealtimes into a bad experience for your child. This, in turn, can make eating and drinking even more difficult for them.

Respiratory (breathing) problems

Your child’s breathing may be interrupted during eating and drinking. 

If they’ve had a tracheostomy – a surgical hole through the front of the neck and into the trachea (windpipe) – this can interrupt the normal pattern of sucking, swallowing and breathing. 

Other features that can affect breathing in children with CHARGE are:

  • Laryngomalacia – floppy or collapsing larynx (the voice box, including vocal cords).
  • Tracheomalacia – floppy or collapsing airway.
  • Subglottic stenosis – narrowing of the airway below the vocal chords and above the windpipe.

Tracheo-oesophageal fistula

Tracheo-oesophageal fistula is a faulty connection between the oesophagus (the gullet) and the windpipe.

Cleft lip or palate

A cleft lip or palate is a gap or split in the upper lip and/or the roof of the mouth. 

A baby with a cleft lip and palate may not be able to breastfeed or feed from a normal bottle because they cannot form a good seal with their mouth.

Choanal atresia (atresia choanae)

Choanal atresia (atresia choanae) is when the back of the nasal passage is blocked or narrowed on one or both sides, or doesn’t connect with the back of the throat. 

This can interrupt the normal pattern of sucking, swallowing and breathing. 

Sensory integration problems

Sensory integration refers to how our five senses work together to perform everyday tasks such as eating and drinking. 

Because of sensory integration problems, your child may not be able to stay alert or sit still to eat and drink. They may also fall asleep during eating and drinking.

Read more about CHARGE syndrome and sensory integration.

Executive function difficulties

Executive function refers to mental skills we use to organise and manage tasks in everyday life and control behaviour. 

Executive function difficulties can make it difficult to start mealtimes or to get your child to start eating and drinking. 

They may even find it difficult to stop eating, despite being full.

Obsessive-compulsive disorder

Obsessive-compulsive disorder is a condition in which people can’t stop having certain thoughts or doing things in a repetitive pattern. 

This can make it difficult to start mealtimes unless they follow very strict routines and patterns.

Nasogastric tube feeding

Nasogastric tube feeding – a narrow, bendy feeding tube that goes through the nose and all the way down into the stomach.

Frequent early medical interventions 

Frequent early medical interventions for children with CHARGE syndrome can include making sure they have a secure airway and stabilising their condition. 

Both nasogastric tube feeding and frequent early medical interventions can:

  • Affect the natural development in a newborn baby of the link between oral feeding (being fed by mouth) and feeling full or satisfied.
  • Lead to missing key critical periods for development because of a delay in starting oral feeding.
  • Affect a baby’s ability in the first two or three months of life to manage their level of arousal in response to internal or external stimuli (something that causes a reaction, such as sound or light). This is known as “infant state regulation”. 
  • Affect a baby’s ability in the first two to six months of life to associate mealtimes with enjoyable social activity.
  • Affect a baby’s ability in the first 6–36 months of life to develop a sense of self, including control and understanding their own physical and emotional states.

Managing eating and drinking difficulties

Occupational therapists and speech and language therapists with expertise in CHARGE syndrome can help through a range of approaches: 

  • Messy play is a great way to help your child explore food in a fun and relaxed way, overcoming any fears they have about eating and drinking. 
  • Exploring food textures. From those that fall off the fingers easily to those that stick to the hands and have to be wiped repeatedly – this can be a helpful approach to building up your child’s tolerance of different food textures. 
  • Hand-under-hand exploration technique. For messy play and exploring food textures, this technique can be a safe way for your child to develop trust and experience new textures. 
  • Encouraging positive mealtime experiences can reduce the chance of your child developing an overreaction to particular types of due to their taste, feel, smell or temperature.

It is also important that your child:

  • Moves from non-oral feeding to oral feeding (by mouth) as quickly as possible.
  • Is examined for difficulties swallowing and for gastro-oesophageal reflux – acid from the stomach leaking up into the oesophagus (gullet).

Get support from Sense

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This content was last reviewed in April 2022. We’ll review it again next year.