CHARGE syndrome: sleeping difficulties

This page is about sleeping difficulties experienced by many children with CHARGE syndrome.

It describes how various features of CHARGE syndrome, related behaviours and frequent early hospitalisation can cause sleeping difficulties.

It also covers ways of managing sleeping difficulties and has links to more detailed information on some topics included here.

On this page:

How many children with CHARGE syndrome have difficulty sleeping?

Reports from parents suggest that more than half of all children with CHARGE syndrome may have difficulty sleeping.

Why do children with CHARGE syndrome have difficulty sleeping?

Many children with CHARGE syndrome have difficulty self-soothing, getting to sleep and staying asleep because of:

  • Many of the physical features of the condition and how these affect their breathing and senses.
  • Frequent hospitalisation early in life.
  • High levels of anxiety.
  • Difficulty self-settling at night for sleep.

Learn more about the main characteristics of CHARGE syndrome.

The causes of sleep difficulties in children with CHARGE syndrome

Visual impairment

Children with a significant visual impairment often have difficulty sleeping.

In response to low light, our brains naturally produce a hormone called melatonin, which helps control our sleep patterns.

Visual impairment can stop the production of melatonin. This disrupts our circadian rhythm – our 24-hor biological clock – in turn disrupting sleep cycles.

Read more about visual impairment in children with CHARGE syndrome.

Choanal atresia and cleft palate

Children with CHARGE also experience sleep difficulties due to:

  • Choanal atresia (atresia choanae) – nasal passages blocked by bone or tissue.
  • Cleft palate – a gap or split in the roof of the mouth.

These can both cause obstructive sleep apnoea – breathing stops and starts while sleeping, causing disrupted sleep.

Known effects of obstructive sleep apnoea include:

  • Poor concentration.
  • Daytime behaviour.
  • Hyperactivity (being unusually or abnormally active).
  • Changes in mood.
  • Impulsive behaviour (unable to control behaviour). 
  • Other problems that affect understanding through learning, our senses and experience.

Otitis media

Otitis media means middle ear infection. Recurring middle ear infection has been linked to poor sleep. 

It is not clear whether middle ear infections cause a lack of sleep because of pain or an effect on the upper airway.

Read more about ear problems in CHARGE syndrome.

Gastro-oesophageal reflux

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

The pain from Gastro-oesophageal reflux can cause disrupted sleep.

Behavioural 

It is difficult to know for sure how much behavioural problems cause sleep difficulties, and how much sleep difficulties cause behavioural problems.

What is clear is that in children with CHARGE syndrome, there is a link between poor sleep and:

  • Self-absorbed behaviour.
  • Anxiety, which may be linked to frequent early hospitalisations. 
  • Poor social skills.

Managing sleep difficulties

Treating obstructions

If your child has any obstructions that cause sleep difficulties, they should be treated. 

In early childhood, this may include treatment for choanal atresia (blocked nasal passages). 

Also, your child should be examined for any symptoms of obstructions in their early years, as this is when children are prone to enlarged tonsils and adenoids. 

  • Avoid bright light at night, as this can disrupt the 24-hour biological clock and natural sleep cycle.
  • A bedtime routine, involving familiar comfort objects, and a set bedtime can help your child to understand what to expect and how they should behave. 
  • A routine can start 30 minutes to two hours before bedtime and can include wind-down activities, such as a warm bath or shower or a bedtime story.
  • Sticking to a set pattern each night helps your child to settle before bed and gives them time to calm down before sleeping. 
  • Make going to the toilet the last task before bed so your child doesn’t have to get up in the night.

Melatonin treatment

If your child’s 24-hour biological clock is greatly disrupted, they may benefit from melatonin treatment. Speak to your GP or CHARGE clinic about this. 

Self-settling

What helps children self-settle can vary greatly in children with CHARGE syndrome.

Try exploring what works for your child and use what you find as part of their settling routine at night. 

This may involve:

  • Heavy covers.
  • The right room temperature.
  • Cuddly or vibratory toys.
  • Night lights.
  • A baby monitor.

If your child leaves their bed and seeks you out at night, try not to get into conversation with them. Instead, lead them quietly and immediately back to bed. 

You might have to do this several times a night, but it is important that your child learns that they’ll get the same response each time. 

Try praising your child in the morning for staying in bed at night, as that helps them to see it as good behaviour that gets rewarded.

You can even use a reward chart or stickers, with a small prize when they’ve earned a certain number of stickers.

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