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Frequently Asked Questions

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Here are some answers to questions we are often asked.  You may find what you need here or you could also look in our 'information' section. 

Health

I have just had a baby with Down's syndrome. Will he be healthy?

Some medical problems are more common in people with Down's syndrome.  However, none of these problems are unique to Down's syndrome, and some children with Down's syndrome are as fit and healthy as any other children.  Because we are aware of common medical problems in people with Down's syndrome, screening programmes can be set up so that any problems are picked up and treated as soon as possible.

Some of the common problems which children with Down's syndrome include:

  • 40 – 50 of babies with Down's syndrome are born with heart problems, half of which require surgery.
  • A significant number of people with Down's syndrome have hearing or sight impairment
  • Thyroid disorder
  • Poor immune system
  • Respiratory problems, coughs and colds
  • Obstructed gastrointestinal tract.

Information on some of these conditions can be found on the website in the medical series booklets.

With advances and increased access to medical care, people with Down's syndrome are living much longer.  Life expectancy for people with Down's syndrome is now at around 60 – 65 years.

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Are immunisations safe for a child with Down's syndrome?

The current opinion of the Down Syndrome Medical Interest Group (DSMIG) is that all routine immunisations should be offered to children with Down's syndrome, and that certain additional immunisations, such as influenza immunisation, should be considered.  There is some evidence that children with Down's syndrome are more susceptible to various infections, while there is no evidence that children with Down's syndrome are more likely to have an adverse reaction to immunisations.

Concern is often expressed particularly about the MMR vaccination, in the light of the recent controversy over a suggested link with autism.  Again, the advice from the DSMIG is that there is no reason to withhold the vaccine from children with Down's syndrome. The vast majority of independent research bodies who have looked into the evidence relating to MMR and autism, have found no good quality evidence linking the two.  There is no reason to suggest that children with Down's syndrome would be any more at risk of adverse side effects.  The diseases which MMR protects against would be likely to be serious for a child with the syndrome, and single vaccines would leave the child at risk from these diseases for longer.

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Why is Down’s syndrome referred to as a “genetic condition”?

The human body is made up of cells.  Each cell is a like tiny factory, which makes the materials, needed for growth and maintenance of the body.  All cells contain a nucleus in which genes are stored.  Genes are grouped along rod-like structures called chromosomes.  Usually, the nucleus of each cell contains 23 pairs of chromosomes, 23 we inherit from our mother and 23 we inherit from our father.

 

In people with Down’s syndrome the cells contain 47 chromosomes, an extra copy of chromosome 21.  This additional genetic material results in Down’s syndrome.

 

There are three types of Down’s syndrome:

 

Trisomy 21 – in which the cells have an extra chromosome 21.  About 94% of people with Down’s syndrome will have this type

 

Translocation – in which extra chromosome 21 material is attached to another chromosome.  Around 4% of people with Down’s syndrome have this type.

 

Mosaic – in which only some of the cells have an extra chromosome 21.  About 2% of people with Down’s syndrome have this type.

 

 

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How is Down’s syndrome diagnosed?

The diagnosis of Down’s syndrome is usually picked up soon after the birth of the baby because of the way it looks.  There are many physical characteristics associated with the condition, which may lead a parent, or medical professional to suspect that the baby has Down’s syndrome.

 

Some of the features include:

 

  • Reduced muscle tone which results in floppiness (hypotonia)
  • A flat facial profile, flat nasal bridge, small nose.
  • Eyes that slant upwards and outwards.  Often with a fold of skins that runs vertically between the lids at the inner corner of the eye (epicanthic fold).
  • A small mouth, which makes the tongue, seem slightly large.
  • A big space between the first and second toe (sandal gap)
  • Broad hands with short fingers and a little finger that curves inwards.  The palm may have only one crease across it (palmar crease).
  • Below average weight and length at birth.

 

Many of these features are found in the general population.  Therefore a chromosome test would need to be done on the baby before a positive diagnosis could be made.  Taking blood from the baby and then analysing the chromosomes does this.  The result is called a karyotype.

 

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Do people with Down’s syndrome have medical problems?

Certain medical problems are more common in people with Down’s syndrome.  These include:

 

  • 40-50% of babies with Down’s syndrome are born with heart problems, half of which require heart surgery.
  • As significant number of people with Down’s syndrome will have hearing and sight problems.
  • Thyroid disorder.
  • Poor immune system.
  • Respiratory problems, coughs and colds.
  • Obstructed gastrointestinal tract.

 

However, with advances and increase access to medical care most of these problems are treatable.  The Down’s Syndrome Association along with the Down’s Syndrome Medical Interest Group have produced health care guidelines to assist families and health professionals to set up screening programmes so that health problems can be picked up early on and treated before they become more serious.

 

None of these problems is unique to people with Down’s syndrome, they also appear in the rest of the population.

 

It is also important to remember that some people with Down’s syndrome do not experience any health problems.

 

Advances and increased access to medical care have also meant that people with Down’s syndrome are living much longer.  Life expectance is now put at 60-65, and many people with Down’s syndrome live even longer.

 

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How does Down’s syndrome affect development?

All people with Down’s syndrome will have some degree of learning disability.  Children with Down’s syndrome do learn to walk, talk and be toilet trained but in general will meet these developmental milestones later than their ordinary peers.

 

DOWN’S SYNDROME – CHILD DEVELOPMENT

 

This table gives an outline of the usual development of children with Down’s syndrome.  Just as with all children there is a great deal of individual variation in the age at which the different skills develop.  In the table we show the usual range for some milestones.  A few children will have additional health problems which may slow their development.  However all will continue to develop at their own pace.

 

 

 

Area of development

 

 

Milestone

 

Age range

 

For you to record the age at which your child acquires these skills.

 

Down’s syndrome

 

Other children

 

Gross motor skills (moving around)

Holds head steady in sitting position

 

Sits alone

 

Stands alone

 

Walks alone

 

3-9m

 

6-16m

 

12-38m

 

13-4m

 

1-4m

 

5-9m

 

9-16m

 

9-17m

 

 

Fine motor skills and hand eye co-ordination

Follows objects with eyes

 

Reaches out and grasps objects

 

Passes objects from hand to hand

 

Builds a tower of two 1” cubes

 

Copies a circle

 

1.5-8m

 

 

4-11m

 

 

6-12m

 

 

14-32m

 

36-60m

 

1-3m

 

 

2-6m

 

 

4-8m

 

 

10-19m

 

24-40m

 

 

Communication skills

 

Babbles “DaDa”, “mama”

 

Responds to familiar words

 

First words spoken with meaning

 

Shows needs by gesture

 

Two word phrases

 

7-18m

 

 

10-18m

 

 

13-36m

 

 

14-30m

 

18-60m

 

5-14m

 

 

5-14m

 

 

10-23m

 

 

11-19m

 

15-32m

 

 

Personal and social skills

Smiles when talked to

 

Feeds self with biscuit

 

Drinks from cup

 

Dry by day

 

Bowel control

 

1.5-4m

 

 

6-14m

 

12-23m

 

18-50m

 

20-60m

 

1-2m

 

 

4-10m

 

9-17m

 

14-36m

 

16-48m

 


Adapted with permission from Cunningham 1988 Down’s Syndrome – An Introduction for Parents. Souvenir Press Ltd.  Human Horizon Series.

Early intervention programmes, which are now widespread for children with learning disabilities, help in all areas of child development.  These programmes can include speech and physical therapy as well as home teaching programmes for the child and family.


Children and adults with Down’s syndrome can and do continue to learn throughout their lives just like the rest of the population.


Who can help – Baby with Down’s syndrome
Midwife, Paediatrician, Health visitor
Social Worker
Child Development Centre
Community Team for People with Learning Disabilities
Benefits Agency
Down’s Syndrome Association


Who can help – Child with Down’s syndrome
General Practitioner (GP)
Speech Therapist, Occupational Therapist, Physiotherapist
Social Worker

Portage
Worker, Schoolteacher, School Nurse, Educational Psychologist
Community Team for People with Learning Disabilities
Down’s Syndrome Association


Who can help – Adult with Down’s syndrome
Further Education Colleges
Specialist Employment Services
Social Worker
General Practitioner
Adult Community Learning Disability Team
Down’s Syndrome Association

 

With good medical care and the right levels of support, people with Down’s syndrome can and do make friends, go to school and college, find and keep a job, and make decisions about their lives and futures.

 

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If you need to, you can get an answer to your own question by contacting our information team.

E-mail us on Telephone us on from 10.00 am to 4.00 pm Monday to Friday.
Fax us on
Write to us at  Down's Syndrome Association, The Langdon Down Centre, , Teddington TW11 9PS

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