Downs syndrome

Advice for new parents

Down's syndrome is when you're born with an extra chromosome.

You usually get an extra chromosome by chance, because of a change in the sperm or egg before you're born.

This change does not happen because of anything anyone did before or during pregnancy.

People with Down's syndrome will have some level of learning disability. This means they'll have a range of abilities.

Some people will be more independent and do things like get a job. Other people might need more regular care.

But, like everyone, people with Down's syndrome have:

their own personalities
things they like and dislike
things that make them who they are

You can also hear from people with Down's syndrome about what's important to them on YouTube

In almost all cases, Down's syndrome does not run in families.

Your chance of having a baby with Down's syndrome increases as you get older, but anyone can have a baby with Down's syndrome.

Speak to a GP if you want to find out more. They may be able to refer you to a genetic counsellor.

Screening

If you're pregnant you'll be offered a screening test to find out your chance of having a baby with Down’s syndrome.

You can have the test at your dating scan (around 11 to 14 weeks).

If you have a higher chance, you can have further tests.

Important

It's your choice whether or not to have any screening tests.

Find out more about screening:

NHS website – what to do if screening finds something
Down's Syndrome Association – frequently asked prenatal questions

Early years pathway

The East Sussex early years pathway for children with Downs Syndrome

Children’s Integrated Therapy and Equipment Service (CITES) is part of a wider community multi-agency team including health visiting, community paediatrics, ISEND Early Years, dietetics, paediatric audiology and ophthalmology.

Children with Downs Syndrome are able to access any of the pathways and packages available from CITES dependent on their area of need. In addition CITES offers an appointment with each of the disciplines – occupational therapy, speech and language therapy and physiotherapy, at about 6 months and also in their pre-school year. These may be offered as a multi-disciplinary appointment or uni-disciplinary appointments.

The purpose of these additional appointments is:

To provide initial advice on how to support your baby with during their early development
To check that your child is making good progress and trouble-shoot any areas of concern
To support any transition needs and ensure that your pre-school child is ready to take the next steps of education. At this time all the therapy disciplines work closely together providing advice and evidence for statutory assessment if needed

The service uses the Downs Syndrome Developmental Journal - Early Support as a basis for discussion.

Speech and language therapy

There is huge variability in the development of speech and language in children with Downs Syndrome. Typically the development of understanding is stronger than expressive language and speech. We use visuals and signing to help with developing early speech and language. Your child will make quicker progress if these approaches are integrated into day to day activities at home and in nursery.

Some children have eating and drinking difficulties and we can also help with this.

If your child’s communication progress is very slow we will offer additional sessions as part of our language pathway or speech package.

Occupational therapy

Activities that other children may develop naturally such as toileting, dressing and feeding can present a challenge for children with Downs Syndrome. An Occupational Therapist will identify which tasks and component parts your child is finding difficult, and provide advice, equipment, techniques or strategies that may help. An Occupational Therapist can help you place expectations that are appropriate to the ability of your child and can suggest positioning or adaptations that might help them become more independent.

Children with Downs Syndrome are more likely to have fine motor skill difficulties. They also tend to have shorter fingers making mastering fine motor activities harder. An Occupational Therapist can provide fun activities to do at home to work on promoting hand function required for tasks such as dressing, use of cutlery or handwriting.

Physiotherapy

The typical presentation of children with Downs Syndrome is one of delayed achievements in physical milestones such as rolling, independent sitting, standing and walking.

Physiotherapy strategies and activities to encourage physical development towards the achievement of these milestones.

Achievement of these milestones is varied among this group of children with walking being achieved between the ages of 2 years up to 5 years of age.

Generally children with Down Syndrome require time and parental encouragement to achieve these goals. The physiotherapy will arrange additional sessions if adjustments to a care package are needed. If your child reaches a physical plateau for more than one year some additional physiotherapy sessions might be needed to consolidate the physiotherapy programme with parents.

Once your child can walk independently your therapist will discharge them to allow continued natural physical development.

Children's Integrated Therapy Service

Speak to the team for
more information.

Helpful links

NHS.uk
Downs-syndrome.org.uk
A series of videos which show activities for babies and toddlers guided by physiotherapist Alexandra Wakahara.
Study which highlights the wide range of ages that Gross Motor development occurs in children with Downs syndrome

Case studies

Max’s story

Max was 2 years old when he was first referred to physiotherapy via internal referral from his occupational therapist. He was just about to start nursery. The main concerns where that although Max could sit unsupported and roll purposefully on the floor and be placed in standing position he was not yet pulling himself to stand or cruising.

The physiotherapist made a full assessment of Max’s function, offered advice to parents and devised a programme of activities to encourage lower limb strengthening and strategies working towards improving his mobility. The therapist taught these to parents and nursery staff so that the activities could be carried out at home and at nursery.

Max had continued involvement with physiotherapy approximately twice per year to continue to support his physical development.

Max was an independent walker by the time he left nursery. He continued to have some difficulties with his balance when walking on uneven surfaces and when using steps and stairs. The multi-agency team supported Max’s transition to school, offering advice to ensure that Max’s specific needs were well supported.

At his final physiotherapy session the therapist observed Max in a PE class to make sure he was able to fully participate with his friends, although in an adapted style. Once assured this was the case the physiotherapist discharged Max with advice to school.

Kent Community Health NHS Foundation Trust

Local stakeholders

Contact our Children's Integrated Therapy Service
Contact our School Health Service
Support services in East Sussex