YOUR BABY HAS DOWN'S
SYNDROME
Most parents have questions about Down's syndrome and what having a baby
with the condition means to them and their family. This article attempts to
answer questions that parents most often ask.
During pregnancy most parents have hopes and dreams for their future child.
When the baby is born with Down's syndrome their dreams are shattered, they are
shocked and confused. The period immediately after a baby's birth is a
difficult time to be given such news. Parents are not at their strongest,
physically or emotionally, and many experience feelings which disturb them. The
information here is based on the writings of parents who have experienced this
shock, have had a baby with Down's syndrome, and have felt many of these
shattering emotions.
Sorrow
When told that a child has Down's syndrome, it would be exceptional for a
parent not to feel sad. If they can express this feeling, by "letting
go" their tears, it will be easier to cope afterwards. There is no shame
in weeping, it is a natural reaction, and crying together can help both parents
bear the sadness. Most parents need to go through a period of mourning for the
imagined or hoped-for child they expected.
Anger
Most parents ask: "Why should it happen to us?" There is no answer
to this question, but it is all right to feel anger and no-one should blame
them. Talking it through with a caring friend may well be helpful.
Shock
It is quite natural after a while to feel "numb". This is the
mind's way of protection against more pain than is manageable. As shock fades,
the parent may experience other reactions, which might include:
- feeling as if in a bad dream
- becoming forgetful and finding it difficult to concentrate
- denial
Guilt
Not all parents feel guilty, but many do. This is also a natural reaction,
although the fact that a child has Down's syndrome is certainly not their
fault. These feelings are perfectly normal and, according to most parents'
experience, they may never be completely eradicated but will become less
prominent as time passes.
Support
It helps many parents to be able to talk over their feelings with others who
have been through the same experience. The Down's Syndrome Association has
branches and groups in most areas of the country. Contact with them, when ready
to do so, helps to sort out feelings about what it means to have a baby with
Down's syndrome.
Causes
Down's syndrome is a genetic condition caused by the presence of an extra
chromosome. Chromosomes are tiny particles which are present in every cell in
every tissue in the body. They carry the "blueprint" for all
inherited characteristics. This blueprint is carried in the form of a coded
message in a chemical substance called DNA. There are 23 pairs of chromosomes
in each cell, hence 46 altogether. One of each pair comes from the father, and
one from the mother. In 1959, a French geneticist, Professor
Jérôme Lejeune, discovered that Down's syndrome was caused by the
presence of an extra copy of chromosome 21, making 47 chromosomes in all.
Down's syndrome is named after the English doctor, John Langdon Down, who
first described the syndrome (i.e. collection of signs or characteristics) in
1866, nearly 100 years before the extra chromosome was discovered. Every day in
the UK, between two and three babies are born with Down's syndrome, which means
that about one baby in 1,000 has the condition. It occurs in all races, in all
social classes, and in all countries throughout the world.
People with Down's syndrome all have a certain degree of learning disability
(mental handicap). The degree of disability varies from person to person, and
it is impossible to tell at birth what that degree will be.
As yet, the cause of the presence of the extra number 21 chromosome is
unknown. It can come from either the mother or the father. The most common type
of Down's syndrome is called Standard Trisomy 21 (also known as Primary Trisomy
21 or Regular Trisomy 21), and it always occurs as a result of an accident of
nature during the development of the egg or sperm, so that the condition is
established during the initial cell division following conception. It is known
to occur more frequently among the children of older mothers, but not know why.
Standard Trisomy 21 (or Primary Trisomy 21) is not hereditary. However,
after giving birth to one baby with Down's syndrome the chances of having
another child with the condition are increased. Overall this chance is between
1 in 100 and 1 in 200, which is considerably less than the chance of having
twins. If in doubt, consult a genetic counsellor.
Physical characteristics
All people with Down's syndrome share certain physical characteristics,
though not every child with the condition has every characteristic. The baby
inherits physical characteristics from both parents, just like any other child,
as well as sharing some of the common signs of Down's syndrome. Each baby is
unique. Some parents wonder if there is a link between the number of these
physical characteristics and the future development of their new baby. In fact,
it is not possible at this early stage to predict the level of ability of the
child.
The extra chromosome means that the baby will be slower to reach milestones
and will have a certain degree of learning difficulty, but most children with
Down's syndrome do learn to walk and talk, ride a bike, read and write - in
fact to do most of the things other children do. It is just that their
development is usually delayed.
The common signs of Down's syndrome are:
- the baby may have looser muscles and joints than other babies; this will
improve with age
- the baby may have a lower than average birth weight and put on weight at a
slower pace than other babies (special weight charts are available for babies
and children with Down's syndrome from the national office of the Down's
Syndrome Association)
- babies with Down's syndrome often have eyes that slant upward and outward;
their eyelids often have an extra fold of skin (an epicanthic fold) which
appears to exaggerate the slant; this does not mean there is anything wrong
with the eyes, they just look different
- the back of the baby's head may be flatter than average
Many babies with Down's syndrome have a single crease which runs right
across the palm of the hand. Doctors often look for this characteristic crease
as a sign that a baby may have Down's syndrome. However, some babies who do not
have Down's syndrome also have a crease like this.
All babies are different from each other, and the same is true of babies
with Down's syndrome. This means that in some babies the characteristic signs
of Down's syndrome are fairly easy to recognise soon after birth, whilst others
may look and behave little differently from other babies. However, experienced
doctors and midwives are usually very good at picking up subtle differences
which suggest that a blood test should be done to check the chromosomes.
The Down's Syndrome Association has literature and information on almost
every aspect of the condition, so contact them for more information at
either:
Down's Syndrome Association
155 Mitcham Road
London
SW17 9PG
 020-8682 4001
 020-8682 4012
or:
Down's Syndrome Association - Scotland
158-160 Balgreen Road
Edinburgh
EH11 3AU
0131-313 4225
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