Everything you need to know about living well with Down’s syndrome
If you are wondering, ‘what is Down’s syndrome?’, this guide may provide some answers for you. Here, we explore what causes Down’s syndrome, what Down's syndrome symptoms may be experienced, and about living with Down’s syndrome.
Remember, you are not alone, and there are many sources of support available to you, your child and your family. If you are concerned about any of the symptoms or information you read here, please consult your GP.
Down’s Syndrome, also called Trisomy 21, was first described by Doctor John Langdon Down. It is a genetic condition caused by having an extra chromosome, and occurs during conception.
Some Down's syndrome symptoms, or characteristics, are present when a baby is born, and a person with Down’s syndrome may have some distinctive physical features. As they grow up, a child with Down’s syndrome will have some sort of learning disability.
Some people with the condition may develop other healthcare conditions through their lives. Everyone with Down’s syndrome is affected differently though and most are able to live long, full lives, capable of doing many things that people without Down’s syndrome are able to do.
Around 40,000 people in the UK have Down's syndrome and around 1 in 1000 babies are born with Down’s syndrome each year.
The way our bodies look and operate is largely a result of our genes.
We inherit our genes from our parents, and they are passed on to us in groups called ‘chromosomes’ with 23 chromosomes coming from each parent. A person with Down’s syndrome has two copies of chromosome 21, meaning they have 47 in total. The extra gene causes Down’s syndrome.
Whilst the extra chromosome is inherited from one parent, this does not mean the parent has Down’s syndrome or is a carrier of a particular gene that causes the condition. Instead, it is caused by a one-off, spontaneous genetic change in the egg or sperm.
For more information about chromosomes, genes and DNA, visit the Genetic Alliance website.
Down’s syndrome is not a disease or an illness, and people with Down’s syndrome do not have definitive list of physical or mental ailments that Down’s syndrome causes. However, the condition does usually bring with it some level of learning disability, developmental delays, and some common physical features, which we cover here in more detail. It is important to remember though, that no two people with the condition are the same. People with Down’s syndrome are individuals, with different abilities, feelings, personalities and experiences. If you have a child with Down’s syndrome, they will be unique in their own way.
A child with Down’s may take longer to learn some skills during their development from newborns, for example, sitting, standing, walking and talking. Many will learn these skills eventually, in their own time.
Most children with Down’s syndrome have some level of learning disability. This means they may take longer to learn skills or to understand and process information. Sometimes, they may find interaction and communication difficult. A small number of children with Down’s syndrome develop other conditions such as autism or ADHD.
Some people with Down’s syndrome may have other physical healthcare conditions that affect their heart, stomach, sight or hearing, for example:
• Congenital heart defect
• Mild digestive problems (constipation, diarrhoea, etc)
• Glue ear
• Cataracts, glaucoma or nystagmus
These may be present from birth or develop as the person grows into an adult. For more information about healthcare conditions that may affect a person with Down’s syndrome, visit the NHS website.
Overall, a person with Down’s syndrome is likely to live a long life into old age. Many are able to live independently. Read more about living with Down’s syndrome later.
Women of all ages have a slight chance of their baby being born with Down’s syndrome. As a woman gets older, the chances of her having a baby with Down’s increases due to the age of her eggs. That said, most women who have babies at a later age do NOT have babies with Down’s syndrome – the risk is simply increased.
It is possible for a pregnant woman to choose to have tests during her pregnancy, to find out if her child is likely to have Down’s syndrome. Some women or couples choose to have this screening test, whilst others do not. Initially, you will be offered a Down’s syndrome screening test between your 10th and 14th week of pregnancy, usually at the same time as a scan to confirm the baby’s due date.
The initial screening does not harm the baby. It involves a blood test for the mother, and analysis of the nuchal translucency during an ultrasound. This data is considered alongside factors such as the mother’s age and the age of the baby to provide a result. This result does not confirm a diagnosis, just a percentage chance. Further procedures are required to obtain a confirmed diagnosis, which present a small chance of miscarriage and these include chorionic villus sampling or amniocentesis.
For more information about Down’s syndrome testing in pregnancy, visit the NCT website.
If a parent or parents chose not to have screening or obtain a confirmed diagnosis before birth, the condition is usually picked up on shortly after birth. Newborn babies with Down’s tend to have some physical characteristics or symptoms of Down’s syndrome in common, such as a flat head at the back, a smaller than usual mouth, a sticking-out tongue, or eyes that appear a little slanted or almond shaped. These are not always noticeable to parents, and your baby will still look like members of your family. Midwives and consultants are trained to notice these features during post-birth checks, and if they suspect your baby has Down’s, they will recommend blood tests to confirm a diagnosis.
Parents report mixed feelings when their unborn, or newborn, baby is diagnosed with Down’s, and combined with the emotion of giving birth, it may feel overwhelming. It is important to remember that your baby is just like any other child, but that they may have some additional needs throughout their lives. If you have been informed that your baby has Down’s syndrome, either before he or she is born, or shortly after, the Down’s Syndrome Association provide a leaflet about looking forward to your baby. The NHS provides more information about the causes of Down’s syndrome and diagnosis of Down’s syndrome.
There is no ‘cure’ for Down’s syndrome, and no ‘treatment’ or medications that can make the condition go away or change the characteristics a person has due to their condition. There are treatments available that can help a child with Down’s syndrome to develop language, motor skills and other abilities, which may range from speech therapy, to physiotherapy, to special educational programmes. There is a range of healthcare support available for other healthcare conditions that may arise as a result of a person having Down’s syndrome. Your GP is the best port of call to discuss treatments for Down’s syndrome or related conditions.
A physiotherapist may be able to help a baby or young child with Down’s syndrome to develop their sitting, rolling or walking skills. An occupational therapist may be able to help as a person gets older. They may be able to find ways for a child or adult with Down’s syndrome to become more independent in the home.
Some people with Down’s syndrome may need medical treatments for other conditions that are linked to their Down’s syndrome. For example, some people may have hearing problems and need audiology treatment, some may find weight gain and obesity are a problem and require support from a dietitian, and some may have heart defects that require cardiology treatment.
There are ‘early intervention’ and therapeutic programmes available to help children with Down’s to develop skills and independence. Brainwave is a charity that provides such therapy to help children with various conditions, including Down’s syndrome. They are able to tailor therapy to each individual child, assessing what areas they need support in, and finding solutions to their specific needs. For more information about Brainwave, visit their website.
Not all children with the condition need these Down’s syndrome treatments though, and many develop such skills on their own, in a supportive family environment. Everyone with Down’s syndrome is an individual with different needs.
Research continues to explore what causes Down’s syndrome and you can find out more about research projects from the Down Syndrome Research website.
There is a lot of Down's syndrome support available for families and individuals. People with Down’s syndrome can do most of the things that people without Down’s syndrome can do, including going to school, college, living independently, going to work and getting married. Attitudes towards conditions such as Down’s syndrome are also changing, and people are increasingly able to live without old stigma attached to their condition.
Read on to find out about living with Down’s syndrome, including help for Down’s syndrome in terms of living independently and products that may help a child’s development.
Most children or adults with Down’s syndrome live healthy, happy lives, but may need extra support in certain aspects of daily life. Read more about the experiences of some people who have Down’s syndrome here.
Being a parent or carer for a child or an adult with Down’s syndrome is likely to have an impact upon your life, in many positive ways. It may also present different challenges to having a child who does not have Down’s syndrome. You may have to consider lots of different aspects of raising your child or supporting them as they grow up, which other parents do not have to think about. For example, you may need to consider whether your child is able to live independently when they become young adults or older. There are many ways that an adult with Down’s syndrome is able to live away from home, with support from carers or within a housing association.
This blog gives one mother’s view of raising a son who has Down’s syndrome.
Mencap offer lots of advice and information on all aspects of daily living, including housing, social care, benefits etc.
If you are a new parent and your child has Down’s syndrome, there is no reason to treat them differently to any other baby. Some babies with Down’s syndrome have additional needs, for example, they may take longer to learn to breastfeed, and your community midwife or health visitor may be able to offer support to you.
Some babies with Down’s syndrome may have additional health needs, and you may spend some time having these diagnosed or treated.
In terms of their development, you should help them to learn language, motor skills and independence by giving them the opportunities to play with toys and other children, talking to them, naming objects and actions, and encouraging their independence.
If you are a new parent and feel you need support but do not know what is available to you, the NHS provides information about services you may find useful.
If you are particularly concerned about any areas of your child’s development, speak to your GP or paediatrician, who may be able to refer your child to other healthcare professionals or services that can help provide Down’s syndrome treatments. For example, some children will benefit from speech and language therapy, physiotherapy, and occupational therapy.
Many children are able to go to mainstream schools and some find their needs are better met at special educational schools. If you need help finding out what educational support your child is entitled to, visit the Government website.
Some children and adults with Down’s syndrome find that daily living aids and sensory aids can help them with some aspects of daily life.
NRS Healthcare provides over 3000 daily living aids and has a team of Occupational Therapists (OTs) to advise what products might be suitable. Here, we provide some suggestions on products that might help with sensory needs, as well as equipment that may help young adults or older people with Down’s syndrome to live independently. These are only some ideas – there are many other products available to suit a person’s specific needs.
PLEASE NOTE: our Expert Advice Service can only give advice about equipment and products which may help you to live more independently. They cannot give any advice on medications or treatments for symptoms of this condition.
Many people with Down’s syndrome are able to work and choose to work. However, statistics suggest that many people with learning disabilities are unemployed. Attitudes of employers are slowly changing, and services such as WorkFit may be able to help match employers and prospective employees with Down’s syndrome.
Healthy eating and taking regular exercise is important for everybody, to ensure our bodies are functioning at their best. People with Down’s syndrome tend to have slower metabolisms, which means it is easy for them to put weight on, which in turn can lead to higher risk of developing health conditions as they get older.
The Downs Syndrome Association provide further helpful information on healthy eating.
We hope this guide has helped you understand more about living with Down’s syndrome. If you are a parent or carer for a person with Down’s syndrome, or if you have Down’s syndrome yourself, you may find it useful to talk to other people who are having similar experiences to you. There is a lot of help for Down’s syndrome available, and here we provide some sources of support, such as online forums and charities that provide advice. We also provide a list of other online resources that provide information about various aspects of living with Down’s syndrome that may be relevant to you.
Contact a family – a charity that aims to bring families who are experiencing similar things, together to provide mutual support
Mencap FamilyHub – is a safe, online forum for sharing experiences, asking questions and talking about learning disability
British Institute of Learning Disabilities (BILD) – a charity supporting the rights of people with learning disability
Downs Heart Group (DHG) – a charity supporting people who have Down’s syndrome and associated heart conditions
Downs Syndrome Association – the leading UK charity for people with Down’s syndrome and their families, which provides a wealth of information and support services such as local groups and a helpline
Downs Syndrome Scotland – the only charity in Scotland supporting people with Down’s syndrome, led by parents
Genetic Alliance – a charity for people with all types of genetic conditions
GOV.uk – official information from the UK Government regarding rights, benefits and laws related to disability, education, healthcare, childcare, housing and employment
Mencap – a UK charity supporting people with learning disability, their families and carers
NHS – provides medical and healthcare information about Down’s syndrome, learning disability and other related conditions
Scope – a charity dedicated to improving the lives of people with all types of disability
Although we always try to explain things as simply and as clearly as possible, sometimes it’s necessary to use the correct medical terminology. Medical terms are often known for being tricky to pronounce and if you’re not an expert in the subject, they can also be a little difficult to understand. Below, we’ve put together a list of terms used on this page along with a brief explanation of what they mean to help make your understanding of Down’s syndrome as straightforward as possible.
Stands for Attention Deficit Hyperactivity Disorder, which is a behavioural condition causing hyperactivity and impulsive behaviour, usually noticed from a young age
A medical procedure that takes fluid from within the amniotic sac (in which an unborn baby is growing within the uterus) in order to test for chromosomal abnormalities of the baby
An umbrella term for a developmental disability, also known as Autism Spectrum Disorder (ASD), which means a person has different ways of processing information, which may cause learning disability, communication or interaction difficulties, repetitive behaviours, and difficulty understanding feelings and sensory input
A visual impairment that causes cloudiness in the eye’s lens, which often requires surgery to correct
A test that a woman can opt to have during pregnancy to test cells removed from the placenta, to test if the baby has a genetic condition
A piece of DNA that stores genetic information
An autoimmune disease that means the body’s immune system reacts to gluten when consumed (e.g. in foods containing flour, wheat, etc) and damages the intestine causing multiple digestive issues as well as other ill health symptoms
When the egg and sperm meet and fertilise to create the beginnings of a foetus
A problem with the heart that is present from birth, and may include for example, a hole in the heart or narrowed valves
Part of a chromosome, made of DNA, which contains the code for how our body looks and functions and is inherited from our parents
A condition of the eye that involves pressure building up and damaging the optic nerve, but which can be treated with medication drops if diagnosed early enough
A condition of the ear that is caused by fluid or mucus build up in part of the tubes in the ear, which can cause temporary hearing loss but is treatable
A test done in pregnancy to measure the thickness of the fluid that sits at the back of a baby’s neck, with a thicker that average result suggesting the baby may have Down’s syndrome or other chromosomal or heart abnormalities – requiring further testing
Uncontrolled or involuntary eye movements