Down’s Syndrome

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)

• Coeliac disease

• 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.

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.

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.

• Sensory aids: ideal for helping babies, young children and even some adults who have sensory needs, or simply stimulating baby’s senses in order to explore and process information

o Visual Effects Sensory Bag

o Dark Den

• Communication aids: people with Down’s syndrome who live independently, or spend some of their time independent from their family or carers, may need to keep in touch with people often. They may find simpler versions of everyday technology like mobile phones, are easier to use than standard ones

o Simple Mobile Phone

o Memory phone with photo buttons

• Household aids: if a person with Down’s syndrome lives independently, they may benefit from technological aids around the home to help them with time or date orientation and remembering things, or may feel more secure with devices that help them contact someone quickly in an emergency

o Reminder Clock

o Memo Minder

o Telephone with Emergency Wrist Pendant

If you would like to speak to one of our Occupational Therapists to find if there are any daily living aids that may help you or someone you care for, please email them [email protected] or telephone 0345 121 8111.

Down’s syndrome and employment

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.

Down’s syndrome diet and exercise

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.

Contact a family – a charity that aims to bring families who are experiencing similar things, together to provide mutual support

Down's Syndrome Association Helpline – call 0345 121 8111

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

ADHD

– stands for Attention Deficit Hyperactivity Disorder, which is a behavioural condition causing hyperactivity and impulsive behaviour, usually noticed from a young age

Amniocentesis

– 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

Autism

– 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

Cataracts

– a visual impairment that causes cloudiness in the eye’s lens, which often requires surgery to correct

Chorionic villus sampling

– 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

Chromosome

– a piece of DNA that stores genetic information

Coeliac disease

– 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

Conception

– when the egg and sperm meet and fertilise to create the beginnings of a foetus

Congenital heart defect

– a problem with the heart that is present from birth, and may include for example, a hole in the heart or narrowed valves

Genes

– part of a chromosome, made of DNA, which contains the code for how our body looks and functions and is inherited from our parents

Glaucoma

– 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

Glue ear

– 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

Nuchal translucency

– 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

Nystagmus

– uncontrolled or involuntary eye movements