An introduction to Down syndrome
Down syndrome is a naturally occurring genetic condition caused by an extra chromosome. Babies have been born with Down syndrome throughout history, across every country and to parents of all ages, races, religions, and backgrounds.
If you’ve discovered that your baby (or a friend/family member’s baby) has or may have Down syndrome, you may be worried and afraid, unsure of what your future holds and what life will look like.
At Down Syndrome UK we understand, and we are here for you; you are not alone.
If you're a parent or expectant parent and you'd like to connect with others, join our community using the links below...
Our #NobodyToldMe the truth about Down syndrome book is a collection of personal lived-experiences written by young people with Down syndrome, their friends and family. We post a copy with our congratulations and compliments to expectant and new parents when they connect via our closed Facebook groups.
Did you know?
1 in 700 babies born with Down syndrome globally
750 babies with Down syndrome born in the UK each year
60+ years – Down syndrome is no longer life limiting
3 types – there are different forms of Down syndrome
What can it mean to have Down syndrome?
Learning and development
Everyone with Down syndrome has a learning disability; with the right support, most will meet the usual childhood milestones and can make good progress at mainstream school. Having a learning disability does not mean a person can’t learn, it generally means it takes longer to master new skills. And as with the rest of the population, most children with Down syndrome become lifelong learners.
Physical characteristics
Historically people with Down syndrome have been represented by an outdated list of characteristics. At Down Syndrome UK, we see and value each person as a unique individual, with their own personality, strengths, and areas where they may need support to thrive.
Modern life with Down syndrome
Today’s reality for many people with Down syndrome is vastly different from past generations. There are higher expectations, more experience and greater opportunities for people with Down syndrome to be able to live their best lives.
Many people with Down syndrome are:
- Attending mainstream schools
- Going to college and university
- Living semi/independently
- Forming relationships and getting married
- Working in paid employment
- Participating in sports and arts
- Contributing to their communities
- Advocating for themselves and others
How does Down syndrome occur?
Down syndrome is a naturally occurring genetic difference, usually involving an extra copy of chromosome 21 in every cell. This happens at the time of conception and is entirely random, there is no connection to anything parents do before or during pregnancy.
In around 99% of cases, having Down syndrome is not inherited and happens completely by chance.
While the likelihood of having a baby increases with parental age – especially after 35 – most babies with Down syndrome are born to younger women. The average age of a mother of a baby with Down syndrome is understood to be 29 years.
Babies with Down syndrome are born to families across the world, regardless of race, ethnicity, or background.
There are three types of Down syndrome:
Trisomy 21 (95% of cases)
Every cell in the body has three copies of chromosome 21 instead of two. This is the most common form and occurs during cell division.
Translocation (3-4% of cases)
Part or all of an extra chromosome 21 attaches to another chromosome.
Mosaicism (1-2% of cases)
Only some cells have the extra chromosome 21, while others have the typical two copies.
Life expectancy
The life expectancy for people with Down syndrome has dramatically improved over recent decades. In 1983, the average life expectancy was just 25 years. Today, it’s nearly 60 years and continuing to increase.
Why has life expectancy improved?
- Increased social inclusion and support.
- Community-based living instead of institutionalisation.
- Better understanding of associated health conditions.
- Better medical care and early intervention.
- Improved heart surgery techniques.
Health
Some people with Down syndrome have additional health needs, but it’s important to note that not every person with Down syndrome will present with a health need. Additionally, none of the health needs that present in people with Down syndrome are unique only to them – all of them can be managed and treatments are well-documented.
Possible Conditions:
Congenital heart issues, many resolving on their own but a minority will require surgery.
More information can be found here: Heart defects
Breathing interruptions during sleep which are treated with medication or a sleep mask/monitor.
More information can be found here: Sleep apnoea
Many people with Down syndrome can have hearing issues, often due to ear infections or ear structure. Simple treatments like grommets or hearing bands can resolve these.
Find out more here: Hearing
Many people with Down syndrome have a lack of clarity of vision and are usually long-sighted, may have cataracts or squint.
Find out more information here: Vision
Usually hypothyroidism which is treated with medication. This is routinely checked annually from birth.
This might including blocked intestines, often common with some babies and may require minor surgery, for example duodenal atresia.
Early intervention and ongoing support can make a significant difference in outcomes for those with Down syndrome.
Key areas of support include:
Myth vs Reality
Myth: People with Down syndrome are always happy
Reality: People with Down syndrome experience the full range of human emotions!
Myth: People with Down syndrome can't live independently
Reality: Many people with Down syndrome live semi-independently or independently
Myth: People with Down syndrome can't work or contribute to society
Reality: Many people with Down syndrome are employed and active community members
Myth: All people with Down syndrome are the same
Reality: Each person is unique with individual personalities, interests, and abilities
Looking forward
The future continues to look brighter for people with Down syndrome. Advances in medical care, education, employment opportunities, and social inclusion mean that people with Down syndrome today can expect to live longer, healthier, and lead more independent lives than ever before.
At Down Syndrome UK, we’re committed to ensuring that every person with Down syndrome has the opportunity to live a fulfilling life and reach their full potential. We provide information, support, and advocacy to help make this vision a reality.
Key Takeaways:
- Down syndrome usually means having an extra copy of chromosome 21
- 1 in 700 babies worldwide have Down syndrome
- Average life expectancy has improved dramatically to nearly 60 years
- Each person with Down syndrome is unique with their own strengths and personality
- With support, people with Down syndrome can lead fulfilling lives
- Early intervention and ongoing support make a significant difference to improving outcomes
Language matters
It is vitally important that people have a contemporary understanding of what life is like having Down syndrome in modern Britain and that language used when speaking of people with Down syndrome is respectful and accurate. We have created some guidelines which we hope you will find helpful.
