Down’s syndrome life expectancy – How long do people with Down’s syndrome live?

What is Down’s syndrome?

Down’s Syndrome is often characterised as having a full or partial extra copy of chromosome 21 and is sometimes referred to as Trisomy 21. It is one of the most common chromosomal conditions at birth.

In Trisomy 21 pregnancies, there is an increased risk of miscarriage or stillbirth.

The presentations of Down’s syndrome can vary drastically. Individuals with Down’s syndrome have mild to moderate intellectual disability, characteristic facial features, and may have treatable medical conditions, such as congenital heart defects, low muscle tone, and low thyroid levels.

Nevertheless, many individuals with Down’s syndrome still lead healthy and active lives. As our understanding of Down’s syndrome continues to grow, the clinical and social management of the condition improves – allowing many individuals to have jobs, relationships and even live independently.

How common is Down’s syndrome?

Down’s syndrome is the most common chromosomal condition and affects approximately 1 in 1,000 births worldwide. This means that around 700 babies are born with Down’s Syndrome each year in the UK.

(Source:  National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention)

What is the life expectancy for people with Down’s syndrome?

The life expectancy for people with Down’s syndrome has increased dramatically as our knowledge and understanding of the condition has grown.

In 1960 the life expectancy of a person with Down’s syndrome was only 10 years. Today, the average life expectancy of an individual with Down’s syndrome is almost 60 years, and this figure is continuing to climb.

Source: Down Syndrome Life Expectancy Is Higher, But Not For Everyone (nationwidechildrens.org)
Source: https://www.cdc.gov/birth-defects/living-with-down-syndrome/index.html

What factors affect the life expectancy for people with Down’s syndrome?

The life expectancy for people with Down’s syndrome can be affected by several factors. These include:

Low birth weight

Babies with Down’s syndrome may be born with a very low birth weight (less than 3.3 pounds). These infants are much less likely to survive past one month compared to Down’s syndrome babies with a normal birth weight (5.5 – 8.8 pounds).

Associated congenital conditions

Infants with Down’s syndrome are often born with other health conditions that can result in a reduced lifespan. For example, Down’s syndrome infants who have a congenital heart defect are much less likely to survive past one year compared to Down’s syndrome babies who do not have a congenital heart defect.

Ethnicity

Studies have shown that non-Caucasian infants with Down’s syndrome have higher infant mortality rates. The cause of this is currently unknown.

Can life expectancy be improved for someone with Down’s syndrome?

There is currently no cure for Down’s syndrome. However, having a good understanding of the condition and undertaking regular health screening can drastically improve the health and quality of life for individuals living with Down’s syndrome.

All individuals with Down’s syndrome have some level of learning disability. Educational, social, and psychological support can be a great aid to their development.

Regular health screening can enable early intervention for medical conditions that are associated with Down’s syndrome. However, as the severity and presentation of Down’s syndrome varies drastically between individuals, there is no single standard treatment for Down’s syndrome. Treatments are based on each individual’s medical, developmental, and intellectual needs. Maintaining a healthy and active lifestyle is important for promoting good physical and mental health and preventing health complications.

How can I get Down’s syndrome screening during pregnancy?

A traditional screening test for Down’s syndrome, Edwards’ syndrome and Patau’s syndrome is available at 11-13 weeks of pregnancy. Known as a ‘combined’ test, it comprises a blood test and an ultrasound scan.

The blood test looks at markers found in the blood that can indicate an increased chance of carrying a baby with a chromosomal disorder, while the ultrasound scan is used to determine something known as the ‘nuchal translucency’.

The results of both these tests, along with the age of the pregnant woman, determine the risk of carrying a foetus with Down’s, Edwards’ or Patau’s syndrome.

In the case of a high-risk result, the pregnant woman will be offered the chance to receive non-invasive prenatal genetic testing (NIPT), another screening test, or diagnostic testing.

Diagnostic testing typically involves amniocentesis or chorionic villus sampling (CVS). For amniocentesis, a long, thin needle is inserted into the abdomen to obtain a sample of amniotic fluid for testing. For CVS, a needle is inserted into the womb to obtain a sample of cells from the placenta.

These tests will provide a definite answer as to whether or not the baby has Down’s, Edwards’ or Patau’s syndrome. However, both tests are invasive and carry a small risk of miscarriage.

For this reason, many pregnant women are choosing private NIPT screening, as it is non-invasive, and available to all expectant mothers irrespective of whether they were classified as high risk by the combined test.

For an AlphaBiolabs NIPT, all that’s required is a blood sample, which is collected from the mother’s arm. This makes the test 100% safe for mum and baby, with no risk of miscarriage.

The test uses next-generation sequencing to analyse cell-free foetal DNA (cffDNA) – fragments of the baby’s DNA that naturally circulate in mum’s bloodstream during pregnancy – and detect chromosomal abnormalities, including Down’s syndrome.

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