Health A to Z
Down's syndrome, also known as Down syndrome or trisomy 21, is a genetic condition that typically causes some level of learning disability and certain physical characteristics.
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Most babies born with Down's syndrome are diagnosed soon after birth and may have:
Although children with Down's syndrome share some common physical characteristics, they don't all look the same. A child with Down's will look more like their family members than other children who have the syndrome.
People with Down's syndrome will also have different personalities and abilities. Everyone born with Down's syndrome will have some degree of learning disability, but this will be different for each person.
Read more about the characteristics of Down's syndrome.
Sometimes parents find out their baby has Down's syndrome during pregnancy because of screening tests. All pregnant women are offered screening tests for Down's syndrome.
Screening tests can't tell you for certain if your baby has Down's syndrome, but they can tell you how likely it is.
If screening tests show there's a chance your baby has Down's, more tests can be done during pregnancy to confirm it.
If these tests show that your baby has Down's syndrome, you and your baby's other parent will be offered counselling so you can talk about the impact of the diagnosis.
You may also be offered an appointment to meet a doctor or other health professional who works with children with Down's syndrome. They can tell you more about the condition and answer any questions you have.
See more about screening for Down's syndrome
Down's syndrome is usually caused by an extra chromosome in a baby's cells. In most cases, this isn't inherited – it's simply the result of a one-off genetic change in the sperm or egg.
There's a small chance of having a child with Down's syndrome with any pregnancy, but the likelihood increases with the age of the mother.
For example, a woman who is 20 has about a 1 in 1,500 chance of having a baby with Down's, while a woman who is 40 has a 1 in 100 chance.
There's no evidence that anything done before or during pregnancy increases or decreases the chance of having a child with Down's syndrome.
Read more about the causes of Down's syndrome.
Although there's no "cure" for Down's syndrome, there's support available to help children with the condition lead healthy, fulfilling lives.
Lots of people with Down's syndrome are able to leave home, have relationships, work, and lead largely independent lives.
Read more about living with Down's syndrome.
People with Down's syndrome are more likely to have certain health problems, including:
Your child may be checked by a paediatrician more often than other children to pick up problems as early as possible.
If you have any concerns about your child's health, talk to your GP, health visitor or paediatrician.
Read more about the complications of Down's syndrome.
If you'd like more information about Down's syndrome, you can visit the Down's Syndrome Association or call their helpline on 0333 121 2300.
Each person with Down's syndrome is affected differently, but most share certain physical characteristics and development problems.
People with Down's syndrome often have certain physical characteristics. Not everyone will have all of them, but they may include:
But people with Down's syndrome don't all look the same – they also look like their parents and family.
All children with Down's syndrome have some degree of learning disability and delayed development, but this varies widely between individual children.
Children with Down's may be slower to learn skills like sitting, standing, walking, and talking. They will develop these skills eventually, it just takes more time.
Children with Down's syndrome often need more support as they grow up, including extra help at school.
Read more about living with Down's syndrome.
There are some conditions more common in people with Down's syndrome.
Read more about the possible complications of Down's syndrome.
Down's syndrome is a genetic condition that happens as a result of an extra chromosome (chromosome 21).
Our bodies are made up of cells that contain genes. Genes are grouped in thread-like structures called chromosomes.
These contain detailed genetic instructions for lots of different things, including:
Usually, cells contain 46 chromosomes – 23 from the mother and 23 from the father.
In people with Down's syndrome, all or some of the cells in their bodies contain 47 chromosomes instead, as there's an extra copy of chromosome 21. This extra gene causes the characteristics of Down's syndrome.
In most cases, Down's syndrome isn't inherited, it's just the result of a one-off genetic change in the sperm or egg.
With every pregnancy, there's a small chance of having a baby who has Down's syndrome.
Some people are more likely to have a child with Down's than others.
The main thing that increases the chance of having a baby with Down's syndrome is the mother's age.
For example, a woman who is:
However, babies with Down's syndrome are born to women of all ages.
Your chance of having a child with Down's syndrome is also increased if you previously had a child with Down's. For most people, this chance is still small (around 1 in 100).
There's around a 1 in 2 chance of a child having Down's syndrome if one of his or her parents has the condition.
With help and support, most people with Down's syndrome are able to have healthy, active and more independent lives.
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If you've recently found out your baby has Down's syndrome, you may be feeling a whole range of emotions, including fear, joy, sadness, or confusion. There's no right or wrong way to react.
It's important to remember you're not alone in your situation. Thousands of people in the UK have Down's syndrome. There are also lots of people who have experience of supporting and caring for people with the condition.
Lots of new parents find it reassuring to talk to other parents. The Down's Syndrome Association can put you in touch with another family who have a child with Down's.
They can share their experiences with you, offer you advice, and talk through any fears or concerns you may have.
Read more information for new parents on the Down's Syndrome Association website.
Most children with Down's syndrome have difficulty learning new things and take a bit longer to reach developmental milestones, such as walking and talking.
There are various things you can do to help your child with their learning and development.
Things that may be useful include:
It's important to find a balance between "special" activities and all the normal things families do.
As with all new babies, at times they'll need to fit in with what's going on around them.
Not everything you do with your baby needs to be educational or meaningful. Any fun activity with the family can be beneficial.
A number of different professionals experienced in caring for children with Down's syndrome will be able to help you with any difficulties you or your child are having.
For many people this will involve an early intervention programme. This is a special programme that aims to help a child with learning disabilities develop, as well as provide support to the family.
An early intervention programme can include:
You'll be advised about things you can do at home to help your child learn and develop. You'll also be able to find out about your child's condition and meet other families like yours.
You can also call the Down's Syndrome Association helpline on 0333 121 2300 for advice.
You may feel you need to give up work or decrease your hours so you can spend more time caring for your child.
If this is the case, it's worth finding out about any benefits you may be entitled to.
Read about financial help for parent carers.
Children and adults with Down's syndrome need regular check-ups to monitor their health.
These check-ups will usually be with a paediatrician (a children's doctor) at first. Your GP may do them as your child gets older.
The health check-ups may involve:
If your doctor spots any possible problems, they can refer you to a specialist.
Read more about the complications of Down's syndrome.
Lots of children with Down's syndrome are educated in mainstream nurseries or schools with support.
But individual needs vary, and some parents feel a special school will be most suitable for their child.
It might help to visit some mainstream and special schools in your local area. Talk to the staff about how they would meet your child's special educational needs.
You can also find out more about education on the Down's Syndrome Association website.
Until the age of 18, child health and social care services are responsible for the care of children with long-term health conditions like Down's syndrome.
From 18, it's usually the responsibility of adult services. Between the ages of 16 and 18, your child will start a "transition" to adult services.
For more information, read about transition planning for disabled young people.
Lots of young adults with Down's syndrome pursue further education, and many go on to work.
Read more about work and disability.
With help and support, lots of adults with Down's syndrome can lead an active and fairly independent life.
Although it may not be possible to live completely independently, some adults with Down's syndrome leave home and live in their communities with support.
Adults with Down's syndrome often move into property owned and staffed by a housing association. Staff can provide different levels of support depending on the person's particular needs.
If necessary, a social worker may be able to help with finding accommodation. An occupational therapist can offer practical advice to help make independent living easier.
Lots of people with Down's syndrome have loving relationships, although they may need some support when it comes to things like contraception.
Men and women with Down's syndrome tend to have lower fertility. This doesn't mean they can't have children, but it does make it more difficult.
Those who decide to have children will usually need specialist guidance and support to help them cope with the demands of a new baby.
If one partner in a couple has Down's syndrome, there's around a 1 in 2 chance of each of their children having Down's syndrome, too.
Some children with Down's syndrome have very few health problems as a result of their condition. Others will need extra medical care and attention.
Your child will usually need to be checked by a paediatrician more often than other children to pick up developing problems as early as possible.
If you have any concerns about your child's health, talk to your GP, health visitor, or paediatrician.
Around half of children with Down's syndrome are born with a congenital heart defect.
The most common defect to affect children with Down's is a septal defect. This is a hole inside one of the walls that separate the four chambers of the heart, often referred to as a "hole in the heart".
If your baby is diagnosed with Down's syndrome, their heart will be carefully checked to spot any problems as soon as possible. They may need surgery to repair the heart if a problem is found.
More serious problems may include:
Lots of people with Down's syndrome have problems with their hearing. This is often temporary, but it can sometimes be permanent.
A build-up of fluid in the middle ear (glue ear) is a common cause of temporary hearing problems in children with Down's syndrome.
If your child has glue ear, they'll usually be referred to an ear, nose and throat (ENT) specialist.
Many people with Down's syndrome also have problems with their eyesight and often need to wear glasses.
Common eye problems include:
Around 1 in 10 people with Down's syndrome have problems with their thyroid gland. This is responsible for controlling your metabolism, the rate at which your body uses up energy.
Most people with Down's syndrome who have a problem with their thyroid have hypothyroidism, which means their thyroid gland is underactive.
Symptoms of an underactive thyroid gland can include:
Hypothyroidism is usually picked up by blood tests. It can usually be treated with medication to replace the lack of thyroid hormone in the body.
People with Down's syndrome are more likely to develop infections, such as the lung infection pneumonia. This is because the body's natural defence against infection (the immune system) hasn't developed properly.
If your child develops a bacterial infection, a course of antibiotics will usually be prescribed to treat it.
People with Down's syndrome tend to develop dementia at a younger age, usually from about the age of 40 onwards. But not everyone with Down's syndrome will develop it.
Possible signs of dementia include problems with short-term memory and understanding, confusion, and disorientation.
Richard Davis' daughter, Victoria, was born with Down's syndrome. He talks about the impact the condition has had on her and their family life.
"We didn't know anything about Down's syndrome when Victoria was born. We now know it's the most common chromosome disorder.
"The people I've met who have Down's syndrome are able to walk, talk, dress themselves, and feed themselves. A lot of them lead an almost normal life.
"Victoria has made many friends at school. She visits other people's houses without us, and other children come here.
"She has lots of interests: she goes to ballet and gymnastics, and used to go trampolining. She also swims because that helps build up her muscles. People with Down's syndrome have low muscle tone.
"Victoria has a sort of global delay because of the Down's syndrome. She's able to move around fairly quickly, but has very little sense of danger compared with her peers at school.
"So you have to keep stressing that something is dangerous, like crossing the road. You have to keep an eye on her all the time.
"Co-ordination is much, much slower and therefore she does miss out on things like games with the other children.
"She's probably never going to go to Oxford or Cambridge and become a rocket scientist, but that's not going to disappoint me because I didn't do that either. Whatever she achieves is going to be great. I'm going to celebrate what she can achieve and not worry about what she can't.
"Looking after Victoria has made our marriage stronger. In the beginning, we thought it was a major problem that we had to overcome, but it really hasn't been.
"There are more trips to the hospital, and Victoria has more colds than an average child of her age. Her development is slower; you can definitely see that when she's playing with her peers.
"Unfortunately, there was no parent support group in our area, so we asked the Down's Syndrome Association to put us in touch with other new parents.
"We got together fairly quickly with six other parents whose child was born around about the same time. Talking to other parents about their experiences was very beneficial to us."