Overview
What is Down's syndrome?
People with Down's syndrome are born with an extra chromosome.
Down’s syndrome usually happens by chance at the point of conception because of a change in the sperm or egg before the baby is born.
This change does not happen because of anything anyone did before or during pregnancy.
What it's like to have Down's syndrome
Like everyone, people with Down's syndrome have:
- their own personalities
- things they like and dislike
- things that make them who they are
People with Down's syndrome will have some level of learning disability. This means they'll have a range of abilities. The majority of babies with Down’s syndrome will reach the milestones of all children but a bit later with help from professionals. Most children with Down’s syndrome go to mainstream schools and learn alongside other children.
Most adults with Down’s syndrome learn to be more independent and have the same life goals as everyone else like have a job, get married, go out with friends, be happy. Other people might need more regular care.
Having a baby with Down's syndrome
In almost all cases, Down's syndrome does not run in families.
Anyone can have a baby with Down’s syndrome but your chance of having a baby with Down's syndrome increases as you get older.
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 the result of this test shows you have a higher chance of having a baby with Down’s syndrome, you can have further tests.
Important
It's your choice whether or not to have any screening tests and screening will not tell you for sure your baby has Down’s syndrome just the likelihood of them being born with the condition.
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 is lots of breastfeeding advice and support if you wanted to breastfeed your baby. https://downsyndromeuk.co.uk/health/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. It is important to remember that there has been a lot of research in to how babies and children with Down’s syndrome learn and thrive, your child will be supported to reach their full potential what ever their ability.
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 Syndrome UK
For new and expectant parents as well as families, parents and carers of people with Down’s syndrome.
Contact number: 0330 111 2121 (Mon – Fri 9am-5pm)
Visit their website: www.downsyndromeuk.co.uk
Email: info@downsyndromeuk.co.uk
They have a wealth of information and support, including:
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 Signalong, Makaton 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 – information about the different services that can support you and your child can be found in the DSUK ‘Little Orange Book of Knowledge’
Don’t
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
The majority of primary aged 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.
You can visit schools and colleges in your area and ask the staff how they can meet your child's needs.
You can get more information about choosing the right school and Down syndrome specific school resources here https://downsyndromeuk.co.uk/resources/preschool/
https://downsyndromeuk.co.uk/resources/primary-school-resources/
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 Individual Development Plan (IDP),
This plan says what education needs your child has and what support they should get.
Having an IDP can help with the following:
- the school could get extra money to support your child
- for you to apply for a place at a school that's better for your child
Ask your Health Visitor, Nursery or School for information about how to request an IDP
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
Like parenting any child, being a parent of a child 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.
https://downsyndromeuk.co.uk/parents/expecting-a-baby/faqs/
https://downsyndromeuk.co.uk/parents/new-parents/new-parent-faqs/
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
Find support groups near you:
DSUK Support Group Network
DSA Support Groups
Speak to a charity
You can get advice from charities such as:
Down Syndrome UK
For new and expectant parents as well as families, parents and carers of people with Down’s syndrome
Contact number: 0330 111 2121 (Mon – Fri 9am-5pm)
Visit their website: www.downsyndromeuk.co.uk
Email: info@downsyndromeuk.co.uk
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
Information on common health needs of people with Down syndrome can be found here
https://downsyndromeuk.co.uk/health/
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) but most heart conditions will either get better on their own or will just need regular monitoring.
But sometimes surgery is needed.
Speak to a children's doctor (paediatrician) to find out the next steps for your baby's care.
For more information and support around heart surgery https://downsyndromeuk.co.uk/health/heart/
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
If you are concerned that your child may have autism speak to a children's doctor (paediatrician) to find out what support is available.
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 website nhs.uk
Last Updated:
24/04/2024 13:43:18