Information about Down’s syndrome for the NHS in Wales

Public Health Wales recently released the latest version of their leaflet ‘Information for women offered further tests for suspected chromosomal conditions’.

This document is designed for women who have chosen to take up the offer of screening and who have received a higher chance screening result.

We believe it is imperative that the official information provided to pregnant women/couples about pre-natal screening is up-to-date, accurate and balanced.

It is for this reason that we agreed to work with the various public health bodies in the UK, including Public Health Wales, with the view of making this information of the highest quality.

With regard to the new version of the document, the DSA does not consider information about infant mortality, treatable health conditions or life expectancy to be appropriate as initial antenatal information for couples who have just learned that their baby may have Down’s syndrome. Maternity screening services have been clear that their view is different and information on certain topics will remain.

With these restrictions in mind, we provided the following information (and the images used in the new leaflet)  to improve communication of health related content predetermined by Public Health Wales. Some of the information we offered was subsequently used:

Section 2 – What is Down’s syndrome and living with Down’s syndrome?

Down’s syndrome is a genetic condition caused by an extra chromosome 21 in all or some cells. A person with Down’s syndrome has 47 chromosomes instead of the usual 46. The extra chromosome cannot be removed from cells.

All women have a chance of having a baby with Down’s syndrome.

All people with Down’s syndrome will have a learning disability. This means they may be delayed in their development and take longer to learn new things. There is a greater understanding these days of how children with Down’s syndrome learn, and help is provided in education settings. Around 8 out of 10 (80%) of children will go to mainstream primary schools although individuals vary greatly in how they develop and will have different needs. These needs cannot be predicted antenatally.

There are support services available for pregnant women and for families who have a child with Down’s syndrome. These include the Down’s Syndrome Association (DSA), who provide a helpline (0333 12 12 300). They have the time and expertise to listen and give more information about Down’s syndrome. There is more relevant information on their website

Some health conditions are more common in people with Down’s syndrome. These include heart conditions, vision and hearing. Many health conditions can be treated, but unfortunately around 5% of babies will not live past their first birthday.

For babies without serious health problems survival is similar to that of other children and most people with Down’s syndrome will live into their 60s or longer.

Most children and adults who have Down’s syndrome lead healthy and fulfilled lives, with more opportunities for inclusion in their communities now than ever before. Most say they enjoy their lives. With support, many more adults are now able to get jobs, have relationships and live independently in homes of their choosing.

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