Information on SEND conditions

Down Syndrome is caused by an extra chromosome in your cells. This usually happens by chance at the time of conception. Only about 1 per cent of cases are inherited.

Children with Down Syndrome do have some common characteristics, and as a result, are often diagnosed shortly after birth.

Most babies born with Down Syndrome may present some common physical characteristics. However, they don't all look the same. They will look more like their family members, than like other children who have the syndrome. People with Down Syndrome also have different personalities and abilities.

Everyone born with Down Syndrome will have some degree of learning disability, but this will be different for each person.

All pregnant women are offered screening tests which can tell you how like it is. If tests show there's a chance your baby has Down Syndrome, further tests can confirm it.

These include:

• Chorionic Villus Sampling - CVS: a small sample of the placenta is tested, usually during weeks 11-14 of pregnancy
• Amniocentesis: a sample of amniotic fluid is tested, usually during weeks 15-20 of pregnancy

If these tests show that your baby has Down Syndrome, you will be offered counselling. This is to discuss what this means for the baby, yourself, and your family. You may also be offered an appointment with a doctor who will tell you more about the condition.

See more about screening for Down syndrome on the NHS website

People with Down Syndrome may have very few additional health problems. However, some do require more medical support because they may have:

• Heart disorders such as congenital heart disease
• Hearing and vision problems (see hearing and vision pages)
• Thyroid problems - such as an underactive thyroid gland - hypothyroidism
• Recurrent infections - such as pneumonia

If you're worried about your child's health, talk to your GP, health visitor, or paediatrician.

Find advice and support on the Down syndrome website. 

Read more about the complications of Down syndrome on the NHS website.

Pre-school

Wood Street Health Centre runs playgroup sessions for children with complex needs such as Down Syndrome. Call: 0208 430 7787 or email WFCDCNursing@nelft.nhs.uk to find out more.

The Specialist Advisory Teachers based at Whitefield School run a playgroup for children with Down Syndrome.

When your child’s ready for nursery, the Early Years Inclusion Support Workers will support you. You can also apply for short breaks if you or your child need a break. Your Health Visitor can tell you more about this.

School

Children with Down Syndrome are usually supported in mainstream schools with additional help. This is set out in a document called an Education, Health and Care plan (EHCP). The type of support the child needs does vary but can include:

• Additional support in class
• Certain teaching approaches
• Speech and Language Therapy
• Occupational therapy
• Physiotherapy

Post 16

At 16 to 18, young people with Down Syndrome are usually referred to their GP for another health assessment.

See the ‘preparing for adulthood’ section to find out more about post-16 options.

Local and national groups

• Down syndrome Association
• The Challenge Group
• Downright Excellent
• Down Syndrome Association’s employment programme:
  • Employment programme website
  • Employment programme - register

Read more about living with Down syndrome.

Facebook groups

• https://www.facebook.com/groups/394576547338059/?ref=share
• https://www.facebook.com/groups/futureofdowns/?ref=share
• https://www.facebook.com/groups/1523991914485782/?ref=share
• https://www.facebook.com/groups/388030344585195/?ref=share
• https://www.facebook.com/groups/139259556143320/?ref=share