CHARGE syndrome: speech and language therapy

This page is about speech and language therapy for children and young people with CHARGE syndrome.

It tells you about the different medical and educational professionals involved. 

It also covers the key role of speech and language therapists, key periods they’ll be involved, and the importance of involving parents and families.

Sections on this page

No two children are the same

Children with CHARGE syndrome benefit from speech and language therapy to develop their language and social skills.

CHARGE syndrome has many features and these vary greatly from person to person.

So, no two children with CHARGE syndrome are the same or have identical needs.

A multidisciplinary team approach

For these reasons, it is likely that your child’s speech and language therapy will involve a multidisciplinary team approach, involving:

  • You and your family.
  • A speech and language therapist.
  • Classroom teacher.
  • Teacher of children who are deaf or hearing impaired.
  • Teacher of children who are visually impaired or blind.
  • Teacher of children who are multi-sensory Impaired (MSI)/deafblind.
  • Audiologist.
  • Occupational therapist.
  • Physiotherapist. 
  • Other medical professionals.

Speech and language therapists

The speech and language therapist should ideally have knowledge of the following areas of speech and language therapy practice.

  • Hearing impairment.
  • Visual impairment.
  • Craniofacial disorders.
  • Eating and drinking difficulties.
  • Gastro-oesophageal reflux – acid from the stomach leaks up into the oesophagus (gullet).
  • Facial palsy – weakness of the facial muscles due to damage to the facial nerve.
  • Sensory integration issues – how all of the body’s senses work together.
  • Tracheostomy – a surgical hole through the front of the neck and into the trachea (windpipe).
  • Learning disability.

The following may also play an important role in your child’s speech and language therapy:

  • A lead speech and language therapist responsible for coordinating the work of the other medical and educational professionals listed above.
  • An intervenor – a specialist one-to-one support person trained in working with people with multisensory impairment, working under the lead speech and language therapist’s supervision. 

You are part of the team

The medical and educational professionals involved in your child’s speech and language therapy should:

  • Involve you and your family, offering support and providing the information you need to make informed choices.
  • Work with you to put a plan in place to support the carry-over of approaches into your home and other settings.
  • View your child holistically – as a whole person, not just as someone with features of a complex syndrome.
  • Check in with you throughout your child’s development, making it clear how you can access speech and language therapy services, and what to do if you have any questions at any time after your child has been discharged from care.
  • Provide you with information about support networks.

It’s also worth remembering that sometimes children put one skill on hold while they develop another.

For example, your child may appear to stop developing their speech and language skills while they focus on learning to walk.  

But once they’ve learned to walk, they’ll start working on their speech and language skills again.

Key periods when speech and language therapists are involved 

The key periods when speech and language therapists will be involved in supporting your child and your family are:

Neonatal

During neonatal care – the first four weeks of your child’s life – speech and language therapists will be involved in:

  • Supporting diagnosis.
  • Planning early care interventions, particularly if your child has:
    • a cleft lip or palate.
    • tracheo-oesophageal fistula – hole between the windpipe and the gullet.
    • choanal atresia – nasal passages blocked by bone or tissue. 
  • Early management of eating and drinking issues, when feeding tubes are inserted.
  • Providing you as a parent with the support and knowledge needed to reduce eating and drinking difficulties later on.
  • Supporting bonding between you and your child during a difficult period involving many medical procedures.

Read more about the key features of CHARGE syndrome.

Early years

School age

  • Continuing support for communication and language skills.
  • Supporting the development of social relationships.
  • Supporting later development of eating and drinking skills.

Transition into adulthood

  • Supporting your child as a young person to express their needs and wishes in transition planning, and make informed choices (if needed).
  • Supporting independence and further developing social relationships.

Read more about special educational needs and disabilities (SEND).

Get support from Sense

We’re here for people with CHARGE syndrome and their families.

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