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 Downs syndrome

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Debbie Lou
Debbie Lou

Number of posts : 218
Age : 50
Registration date : 2007-05-20

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PostSubject: Downs syndrome   Downs syndrome Icon_minitimeTue Mar 11, 2008 9:23 am

By Emily Perl Kingsley

First Questions
What is Down's syndrome?
Down's syndrome is a life-long condition that causes delays in learning and development.
Why does Down's syndrome happen?
Down's syndrome occurs because your baby's cells contain an extra chromosome 21.
Is it my fault?
Down's syndrome is never anyone's fault; it just happens.
It has never been linked with particular foods or actions or pollution, it occurs in all races and religions.
Whatever else you may feel at this time, don't feel guilty. Some mothers especially feel this way having been the ones who carried the baby.
How can doctors tell my baby has Down's syndrome?
Doctors can usually tell that our children have Down's syndrome when they examine them and notice certain physical characteristics.
Our babies are usually floppy (have hypotonia) and have very flexible joints. This will improve as they get older.
Usually our babies have a face that looks flattened, excess skin on the back of their necks and the back of their heads may be flatter than average.
They often have eyes that slant upward and outward. Their eyelids often have an extra fold of skin (epicanthic fold) which appears to exaggerate the slant. This does not mean there is anything wrong with the eyes. They just look different.
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 the baby may have Down's syndrome. However, some babies who do not have Down's syndrome also have a crease like this. They may have a larger than usual gap between the big toe and the second toe (sometimes called a 'sandal gap').
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 differently from other babies. Your baby will look like the rest of your family, the Down's syndrome accounts for only a few of your baby's looks.
How can doctors be sure my baby has Down's syndrome?
A blood test will show for certain if you baby has Down's syndrome. This is called a chromosome analysis test and will show the extra Chromosome 21 material which causes Down's syndrome.
Are the doctors ever wrong?
It is extremely rare for the blood test to show normal chromosomes when a doctor thinks your baby has Down's syndrome.
There is no need to wait for the results before telling people about your baby's Down's syndrome.
Until the results come, you may find it easier to spend time getting to know your baby rather than worrying about Down's syndrome.
Can Down's syndrome be cured?
Down's syndrome is a life-long condition that cannot be cured.
Like any other child, our babies vary in their abilities and achievements. It is not possible to predict your baby's abilities and achievements at birth. They are not linked to appearance.
The problems can be eased if your baby has the right help and if people about you have a positive accepting attitude to Down's syndrome.
How severe is my baby's Down's syndrome?
All people with Down's syndrome will have some degree of learning disability.
What is a learning disability?
This means that it takes longer to process information, to learn new skills, and that tasks and learning may need to be broken down into smaller steps.
If someone has a learning disability it means that they may not learn things as quickly as other people and they may need more help and support to learn. Learning disability is not an illness. It is a permanent condition, but with the right kind of help many people can acquire practical and social skills even if this may take them longer than usual.
Will My Baby Be Healthy?
Babies with Down's syndrome can be fit and healthy and have no more medical problems than any other child.
However, our babies can pick up coughs more easily than other children can and their narrow ear and nose passageways may become blocked more often.
Just over half of children with Down’s syndrome are born with a heart or bowel problem. These require an operation which may be done soon after birth or when the baby is older and stronger.
Information about routine medical care and health problems can be found in the insert supplied with this booklet for your personal child health record. You can also find out more about health issues in our early support booklet.
This list of possible medical problems can seem daunting but it is important to remember that these conditions are known to occur in children with Down’s syndrome and can be looked out for and can be treated as quickly as possible.
What will my baby be like?
Like all babies, your baby will eat and sleep and cry and need nappy changes and like all babies your baby will need warmth, comfort and plenty of cuddles.
Your baby will learn and develop more slowly than other babies, but by this time next year, your baby will probably be able to sit up, roll around, chuckle, charm your family and friends and enjoy playing with birthday presents.
What will my baby be like as an adult?
Your baby will grow through childhood to become an adult member of your family who reflects your interests and values.
Our parents say it is better to deal with the baby you have now rather than worrying about the teenager or adult you imagine.
The outlook for our children has improved greatly over the past generation. Do not base your ideas on out-dated information or the lives of older adults who have not had today’s levels of health care and early intervention.
What if I don’t want the baby?
Some families at first feel they don’t want their baby.
Usually this feeling changes as they get to know their own little baby who needs them now rather than “this baby with Down’s syndrome with an unknown frightening future”.
Occasionally the feelings of rejection persist and parents decide to have their baby temporarily fostered to give them some time to think about what is best. Sometimes it is best for the baby to be adopted. There are many families happy to adopt a baby with Down’s syndrome.
Will it happen again?
Probably not.
A genetic counsellor can give you detailed figures, but for most families the chances of having another baby with Down’s syndrome are about one in two hundred.
You can choose an amniocentesis in your next pregnancy to see if your baby has Down’s syndrome.

Telling Others
Brothers And Sisters
Don’t be afraid to involve your children as soon as possible. It’s OK to show them you hurt – they may well realise that already.
Tell them in an honest and open way. They may not understand or remember all the information, so follow their lead, keep listening and answer their questions.
You could say something like “Mummy and daddy are sad because we wanted a baby like most other babies and our baby has Down’s syndrome.”
Follow your children’s lead in deciding what else to tell them. You may want to cover things like………..
It’s not your fault the baby has Down’s syndrome, it just happened by chance.
Babies with Down’s syndrome find it hard to learn new things. They will want to join in and do the things you like doing but they might take longer learning how do to it and they may not be good at it.
The baby will always have Down’s syndrome.
You can’t catch Down’s syndrome.
Brothers and sisters are very important to a baby.
We love you very much and we love the baby too.
Your children will follow your lead. If you treat the Down’s syndrome as just one aspect of your baby’s life, your children will too.
The DSA has information about books that you can use with your children to explain Down’s syndrome.
Other people
Telling family and friends can be very hard. Only you know when and how it is best to tell other people.
Sometimes you need to tell close friends or family so you have someone to cry with.
Sometimes it is easier to tell the most gossipy of your friends and ask them to pass the information around so that people know before they talk to you.
Sometimes it is best to wait until you have come to terms with the news yourself and are able to cope with the other person’s reaction.
Only you can decide how much of your baby’s story to tell someone and which words to use.
Sometimes family, friends and people you meet say very insensitive and hurtful things. Try to ignore these comments. They are often based on misunderstandings.
People will follow your lead. If you are open, honest and positive about Down’s syndrome, they will be too.
Give your family and friends copies of the DSA leaflets “ We welcome your baby” and “I don’t know what to say”.
You may find you are very sensitive to people you meet when you are out and about.
You may not be sure if other people realise your baby has Down’s syndrome. You can choose whether or not to mention it.
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