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

Down’s Syndrome, sometimes referred to as Trisomy 21, is one of the most common chromosomal conditions. In this article we take a look at the life expectancy for people with Down’s syndrome, what can affect the life expectancy, and how it can be improved.

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/ncbddd/birthdefects/downsyndrome/data.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.

Are there things that can be done to improve life expectancy for people 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 screening test for Down’s syndrome, Edwards’ syndrome and Patau’s syndrome is available at 10-14 weeks of pregnancy. The screening test that is most widely available is known as a combined test.

The combined test comprises of 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. The ultrasound scan is used to determine something known as the “nuchal translucency”. The results of both of these tests are used along with the age of the pregnant woman to determine the risk of carrying a foetus with Down’s syndrome, Edwards’ Syndrome or Patau’s syndrome.

In the case of a high-risk result from the combined test, the pregnant woman will be offered the chance to receive NIPT, which is another screening test, or diagnostic testing, which may be amniocentesis or chorionic villus sampling (CVS).

Amniocentesis and CVS will provide a definite answer as to whether or not the baby has Down’s syndrome, Patau’s syndrome or Edwards’ syndrome but, in rare cases, amniocentesis and CVS can cause miscarriage. Therefore, many pregnant people are choosing to take a NIPT screening test privately, as it is available to all expectant mothers, irrespective of whether they were classified as ‘high risk’ by the combined test.

To perform NIPT and CVS/amniocentesis, foetal DNA must be obtained for analysis. Foetal DNA is traditionally acquired through invasive sampling methods (e.g. amniocentesis or CVS). Amniocentesis involves a long, thin needle that is inserted through the abdomen (stomach) to obtain a sample for testing. For CVS, a needle is inserted into the womb to obtain a sample of cells. Both procedures are invasive and increase the risk of pregnancy loss. The increased risk of miscarriage is often a dilemma, and many pregnant women therefore opt for NIPT as their initial screening test.

Traditional screening consists of multiple tests across the first and second trimesters, which can detect around 85% of babies with Down’s syndrome, and 80% of babies with Edwards’ or Patau’s syndrome.

The AlphaBiolabs IONA® NIPT test only requires a simple blood sample. This can be provided by any expectant mother in the first trimester, from 10+ weeks gestation, and is not limited to just those who received a high-risk result from the combined test. The AlphaBiolabs NIPT test is a laboratory test which detects 97.2%-100% of trisomies in singleton and twin pregnancies. The AlphaBiolabs IONA® NIPT test can also provide foetal sex determination, which is not offered by the NHS. With results available in in 5-7 working days, you can get results much faster than the traditional testing pathway.