Overview

What is Down's syndrome?

Down's syndrome is when you're born with an extra chromosome.

You usually get an extra chromosome by chance, because of a change in the sperm or egg before you're born.

This change does not happen because of anything anyone did before or during pregnancy.

What it's like to have Down's syndrome

People with Down's syndrome will have some level of learning disability. This means they'll have a range of abilities.

Some people will be more independent and do things like get a job. Other people might need more regular care.

But, like everyone, people with Down's syndrome have:

  • their own personalities
  • things they like and dislike
  • things that make them who they are

Having a baby with Down's syndrome

In almost all cases, Down's syndrome does not run in families.

Your chance of having a baby with Down's syndrome increases as you get older, but anyone can have a baby with Down's syndrome.

Speak to a GP if you want to find out more. They may be able to refer you to a genetic counsellor.

Screening

If you're pregnant you'll be offered a screening test to find out your chance of having a baby with Down’s syndrome.

You can have the test at your dating scan (around 11 to 14 weeks).

If you have a higher chance, you can have further tests.

Important

It's your choice whether or not to have any screening tests.

Find out more about screening:

Down's Syndrome Association - frequently asked prenatal questions

Advice for new parents

Babies with Down's syndrome are like any newborn babies.

They'll be eating, sleeping, crying, and needing love and cuddles just like all babies.

Some babies with Down's syndrome might need extra help. This could be with things like feeding.

There's support available for whatever you or your baby needs.

What life will be like

No one can tell you what life will be like for your child. This is the same for children who do not have Down's syndrome.

Children with Down's syndrome will have some level of learning disability – it's not possible to know how this will affect them.

Like any child they'll:

  • have their own personality
  • learn at their own pace
  • have things that are important and unique to them

Try not to think too far ahead and enjoy time with your baby.

Where you can get support

It might help to speak to other parents, families and charities who know how you're feeling.

Down's Syndrome Association

For people with Down's syndrome, their parents and carers.

Call their helpline: 0333 1212 300
Visit their website: www.downs-syndrome.org.uk
Email: info@downs-syndrome.org.uk

They have:

National Portage Association

For families with pre-school children with additional needs.

How to help children and young people

Things you can do to help

Children and young people with Down's syndrome have some level of learning disability. This means they may need help with daily life.

What they need help with is different for each person. And this can change as they get older.

You can try these things to help with their development.

Do

  • praise them when they learn something new
  • speak clearly and calmly so they can learn from you
  • play, sing songs and read books together to help with sounds and words
  • try showing them how to do something instead of just giving instructions – this can be easier to follow
  • try ways to help them communicate such as SignalongMakaton or PECS
  • try to set routines so they feel more settled – for example, for getting up and at mealtimes
  • encourage them to be healthy and active – find activities on the Down's Syndrome Association DSActive website
  • look out for changes in mood or behaviour – they may not be able to tell you something's wrong or they're unwell
  • take them for regular hearing, eyesight and health checks

Don’t

  • do not talk down to people with Down's syndrome – treat them like anyone their age
  • do not just talk to parents or carers, talk directly to people with Down's syndrome
  • do not use outdated and offensive language when talking to people with Down's syndrome – see the Down's Syndrome Association language guide

Medical support

Children with Down's syndrome should have regular check-ups with a children's doctor (paediatrician) or a GP.

This is because there are conditions they may be more likely to have.

It could help for them to see:

  • a speech and language therapist – for help with speaking
  • a physiotherapist – for help walking if they have low muscle tone
  • an optician or hearing specialist – for help with vision and hearing
  • an occupational therapist – for help with their development

Speak to a GP, health visitor or your local council to find out how your child can get these services.

Support with education

Choosing a school or college

Lots of children with Down's syndrome go to mainstream schools.

There are also special schools and colleges for children and young people who might need more help.

Where your child goes depends on:

  • the help your child needs
  • what's available where you live

You can visit schools and colleges in your area and ask the staff how they can meet your child's needs.

Special educational needs support

Children with Down's syndrome will get special educational needs support at their school or college.

Special educational needs support might include things like:

  • extra support from a teacher or assistant
  • help taking part in lessons
  • support with things like eating and getting around school

Find out more about support they can get at school

If your child needs more support

You can apply for an education, health and care plan (EHC plan, or EHCP).

This plan says what education and health needs your child has and what support they should get.

Having an EHC plan can either help:

  • the school get extra money to support your child
  • you apply for a place at a school that's better for your child

Find out how to get an EHC plan

Support for adults

Day-to-day life

You may need help with day-to-day things like:

  • cooking food
  • cleaning
  • shopping
  • going to appointments

Your family, friends, carer, support worker or personal assistant can help you with these things if you need it.

If you need more support than you're currently getting:

Choosing where you live

You might be thinking about where you want to live.

There are lots of places you can choose.

For example you could:

  • live with your parents
  • live in your own home
  • live in a home with other people

Your family, carer or support worker can help you decide what you want to do.

You may be able to get some financial help with your living costs too.

Find out more:

Getting a job or volunteering

If you want to get a job, it might help to get in touch with the Down’s Syndrome Association.

They run WorkFit, which helps people with Down’s syndrome get paid jobs and voluntary work.

You or your carer can call 0333 12 12 300 for more information.

You can also speak to a work coach at your local jobcentre.

Find out more:

Getting active

Doing exercise can make you fitter, healthier and feel better. And it's a great way to meet people and make friends.

You can find out about activities near you from your local council.

The Down’s Syndrome Association also runs something called DSActive.

They have lots of things you can do like:

  • football
  • tennis
  • athletics
  • walking

Find activities near you

Support for families and carers

Supporting someone with Down's syndrome can be both rewarding and challenging.

If you need help, or just want someone to talk to, there's lots of support available.

Speak to parents and families

It can help to speak to other parents and families who know how you're feeling.

You can do this by:

  • getting in touch with people on forums and social media
  • going to a support group – ask your midwife or health visitor about local support groups

The Down's Syndrome Association also has a list of support groups:

Find support groups near you

Speak to a charity

You can get advice from charities such as:

Down's Syndrome Association

For people with Down's syndrome, their parents and carers.

Mencap

For people with learning disabilities and their families.

Contact

To support and bring together families with disabled children.

Phone: 0808 808 3555
Website: www.contact.org.uk
Email: info@contact.org.uk

Other health conditions

Important

If you have Down's syndrome, you should see a GP once a year for a check-up, so they can check your health.

This is because there are other health conditions you may be more likely to have.

More common health needs

Help with speech, language and communication

Children with Down's syndrome might need some help speaking.

A speech and language therapist can help. They can:

  • check if your child needs any help with their speech
  • suggest things you can do to help your child with their speech

Speak to a children's doctor (paediatrician), health visitor or GP who can refer your child to see a therapist.

Help with vision and hearing

People with Down's syndrome will need to have their sight and hearing regularly checked.

They may need to:

  • wear glasses
  • have a hearing aid
  • see a specialist for help if they have something called glue ear

Speak to a children's doctor (paediatrician), health visitor or GP for more information.

Having vaccinations

People with Down's syndrome are more likely to become unwell through an infection like pneumonia or flu.

So it's important to get vaccinations.

Other conditions

Heart conditions

Doctors will check your baby's heart soon after they're born.

This is because almost half of all children with Down's syndrome are born with a heart condition (congenital heart defect).

If your baby has a heart condition it can sometimes get better on its own. But sometimes surgery is needed.

Speak to a children's doctor (paediatrician) to find out the next steps for your baby's care.

Autism

Some people with Down's syndrome can also have autism.

Common signs of autism include:

  • finding it hard to understand what others are thinking or feeling
  • getting very anxious about social situations
  • finding it hard to make friends or preferring to be on your own

Alzheimer's and dementia

Adults with Down's syndrome should have regular check-ups from the age of 30 to look for any possible signs of dementia.

This is because they can develop dementia at a younger age.

It can help to look out for signs such as:

  • not being able to remember new things
  • getting confused more easily
  • finding it harder to understand what people are saying

Often these signs can be linked to conditions other than dementia.

But if you think someone you know is showing signs of dementia encourage them to speak to a GP.

You can read more in the Down's Syndrome Association's booklet Getting older



The information on this page has been adapted by NHS Wales from original content supplied by NHS UK NHS website nhs.uk
Last Updated: 20/09/2022 15:04:59