Trisomy 21 (Down syndrome)

On this page

• What is Trisomy 21?
• Advice for new parents
• Why Cheyne Child Development Centre?
• Support at Cheyne Child Development Centre
• Local support
• Useful resources
• Transition

What is Trisomy 21?

• Trisomy 21 (also known as Down syndrome) is a genetic condition caused by an extra copy of chromosome 21.
• It can be associated with a range of physical traits and varying degrees of learning disability.
• Each child is unique, with their own personality, strengths and developmental outcomes.

Advice for new parents

• Babies with Down syndrome have the same basic needs as any newborn.
• Some babies may need extra help, particularly with feeding.
• Support is available through your health visitor and specialist services.

Helpful information for new parents

• Down’s Syndrome Association: you and your baby
• Down’s Syndrome Association: home page and resources
• Positive About Down Syndrome: a website by parents for parents and parents-to-be

Bright Beginnings is a practical guide for families. If you have been given a copy by your team, it can be a helpful starting point. If you do not have it, ask your health visitor or Cheyne team about how to access it.

Why Cheyne Child Development Centre?

Children with Down syndrome may experience health needs and developmental delays. Cheyne Child Development Centre supports families by monitoring health and development during the early years and helping you access the right services at the right time.

Support at Cheyne Child Development Centre

A multidisciplinary team can support your child and family. The team may include:

• Community paediatrician – annual health and developmental reviews
• Physiotherapy – support with motor skills and physical independence
• Occupational therapy – support with daily activities as needed
• Speech and language therapy – support with feeding, swallowing and communication
• Clinical nurse specialist – family support and help accessing community services
• Music therapy – supports communication and movement through music
• Clinical psychologist – advice on emotional and behavioural needs, including parent workshops

Local support

Local Offer (SEND services)

Each local authority provides a “Local Offer” which explains SEND services and support in your area. The links below are examples for the boroughs Cheyne commonly works with:

• Kensington and Chelsea: Family Information Service and SEND Local Offer
• Hammersmith and Fulham: Local Offer for SEND
• Westminster: Family Information Service and SEND Local Offer

Parent-led forums and local support

• Hammersmith and Fulham: Parents Active – Realising our children’s rights
• Kensington and Chelsea: Full of Life – support for families living in Kensington and Chelsea
• Westminster: Make it Happen – parent carer forum

If your borough is not listed above, search online for “Local Offer” plus your borough name, or contact the Cheyne Specialist Nursing Team at chelwest.ccdscnsteam@nhs.net.

Useful resources

The following organisations provide guidance and support for families:

• Down’s Syndrome Association
• Down Syndrome UK: information for new parents
• Downright Excellent
• Mencap
• National Portage Association
• Contact: the charity for families with disabled children
• Scope: advice and support

If you would like help navigating these resources or finding local services, contact the Cheyne Specialist Nursing Team at chelwest.ccdscnsteam@nhs.net.

Transition

From age 14, young people with Down syndrome are usually added to the GP learning disability register. This means they are entitled to an annual health check with their GP.

• NHS: annual health checks for people with learning disabilities

For more information about transition, please see our transition page:

• Transition to adult services