Advice for new parents
If
you have recently found out that your child has Down Syndrome, you'll be
experiencing a variety of emotions. To help you, we have
tried to answer some of the more commonly asked questions. Rest assured you're
not alone and we are here to offer support. If you would like to contact
someone for more advice, please have a look at our list of contacts to
decide which one suits you best.
Could
we have prevented our baby having Down syndrome?
- NO.
Nothing either of you have done has contributed to this condition.
Nobody is to blame for your child
having Down
syndrome. Down
syndrome is
a genetic
disorder (i.e.
something you are born with which is present in the baby at the
moment of conception) caused by the presence of an extra chromosome.
- Down
syndrome occurs in all races,
in all social classes, in all countries throughout the world
and is born to women of any age. It is important to remember
right from the start that NOBODY IS TO BLAME.
- Standard Trisomy 21 is not hereditary; however 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 say having ‘twins out of the blue’.
Will our baby have health problems?
It
is important to remember that like any child your baby is an individual
who will suffer health problems
to a greater
or lesser
degree
than the next child. There are no specific health problems that any
child should have however there are more common areas that children with
Down syndrome
are susceptible to:
- Chest
and sinus problems - Babies
and young children with Down syndrome tend to be more prone
to chest and sinus infections, but thanks to better knowledge
and care, such infections
are no longer serious.
- Feeding
Problems - Some
babies with Down syndrome seem to lack the strength and determination
to feed in the early days. Some may be slow to sort out the
complicated coordination
necessary to suck, swallow and breathe at the same time, and hence
they splutter and choke a bit.
Although
not always the case many babies with Down syndrome find it easier
to bottle feed and it will not harm your baby
to have formula milk. The important
thing is that you and your baby are as contented as possible.
When you begin to feed your baby it is
worth trying to hold them fairly upright to feed and to check that their
tongue is not sticking to the roof
of their mouth.
DO NOT hurry the feed. Babies with Down
syndrome often feed very slowly, so
do not stop too quickly.
- Heart
problems - About
1 in 3 children born with Down
syndrome has
a heart defect. Some are quite minor such as heart murmurs;
some defects are severe and require medication
and/or surgery.
Your baby’s
heart will be one of the first things checked by doctors at your
first neonatal examination
and if there is
any doubt
about a heart
defect being present further tests will be run. The Doctors will
continue to check for heart defects throughout the first year.
- Intestinal
problems - Malformations
of the gastrointestinal tract are present in about 5 – 7%
of children with Down
syndrome.
The
most common malformation is a narrowed, obstructed duodenum
(the part of the intestine
into which the stomach
empties).
This disorder,
called duodenal atresia, interferes with the baby’s milk
or formula leaving the stomach and entering the intestine for digestion.
The
baby often vomits forcibly after feeding, and cannot gain weight appropriately
until the defect is repaired.
- Skin
care
- Your
baby’s
skin may be very dry. Massage them with a little baby oil and put
some in the
bath water. A little moisturising cream such as
E45 cream rubbed gently on the skin every day should prevent drying
and crying.
- Sight,
hearing and speech - About
half of all Down syndrome children need glasses. Your child may have
crossed eyes or have problems seeing things that are near or far
away.
Your
child may have ear infections more often. Also, most children with
Down syndrome have some amount of hearing loss.
If
your child is hard of hearing, he may have problems talking and understanding
things that people say to him.
What
does the future hold for our child?
- Children
with any disability these days are being educated like all
children to be part of and to contribute to their local community.
Children with Down syndrome can grow and live long and fulfilled
lives.
- Provided
they are allowed the opportunities they need to develop self-help
skills and
independence,
people with Down syndrome can live a full and active life and have
successful and happy relationships, facing many of the challenges
we all encounter, school, further education,
work
and
a home of
one's own.
- More
than ever, children with Down syndrome are now being integrated
successfully into mainstream
schools.
One
parent’s
view
- "When
Adam was diagnosed our world was turned upside down and went
from being one of the happiest days of our lives to one of the
saddest. If we had known then just how much Adam was to enrich
our lives and the lives of so many others, I’m sure we would
not have felt this way. Adam is now a key and well respected member
of
his mainstream
school and is always the centre of attention wherever he may
be."
Click
here for
information on the Just Kids book, and here for
more information on the New Parents Support Pack.
