Finding Out
First Questions
Telling Others
Your Feelings
Looking After Yourselves
Feeding Your Baby
Your Baby's Development
Early Intervention

First Questions

There may be many questions racing around your head, some of which you’re too scared to ask. Other parents say these were some of their first questions.
What is Down syndrome?

What is Down Syndrome?
Down syndrome is a life-long condition that causes delays in learning and development.

Why does Down syndrome happen?
Down syndrome occurs because your baby’s cells contain an extra chromosome number 21.

Is it my fault?
• Down 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.

Doesn’t Down syndrome just happen to older mothers?
• The probability of a mother having a baby with Down syndrome increases with the mothers age.

1 in 1500 probability age under 30
1 in 100 probability age 40

But, most babies with Down syndrome are born to mothers under 30 because this is the largest group of mothers having babies.

How can doctors tell my baby has Down syndrome?
Doctors can usually tell our children have Down syndrome when they examine them.

• Our babies are usually floppy (have hypotonia) and have very flexible joints.
• Usually our babies have a face that looks flattened and excess skin on the back of their necks.
• They often have slanted eyes and small ears.
• They may have a single crease across their palms and a gap between the big toe and the second toe.

Your baby will look like the rest of your family, the Down syndrome accounts for only a few of your baby’s looks .

How can doctors be sure my baby has Down syndrome?
• A blood test will show for certain if your baby has Down syndrome. This is called a chromosome analysis test.
• It takes up to a week to get the results of this test.

Are the doctors ever wrong?
• It is extremely unusual for the blood test to show normal chromosomes when a doctor thinks your baby has Down syndrome.
• There is no need to wait for the results before telling people about your baby’s Down syndrome.
• Until the results come, you may find it easier to spend time getting to know your baby rather than worrying about Down syndrome.

Can Down syndrome be cured?
• nDown syndrome is a life-long condition that cannot be cured.
• The problems caused by Down syndrome can be eased if your baby has the right help and early intervention and if people round about you have a positive accepting attitude to Down syndrome.

How severe is my baby’s Down syndrome?
• In the same way that you can’t be ‘a little bit pregnant’, you can’t have a little bit of Down syndrome. You either have Down syndrome or you don’t.
• 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.

Will my baby be healthy?
• Our babies can be fit and healthy and have no more medical problems than any other child.
• Our babies can pick up coughs and colds more easily than other children. Their narrow ear and nose passageways may become blocked causing partial deafness.
• Just over half of children with Down syndrome are born with a heart or bowel problem. An operation may be needed immediately or when the baby is older.

What will my baby be like?
• Your baby will be like a baby. Your baby will eat and sleep and cry and need nappy changes, your baby will grow up and go to school.
• 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 become an adult member of your family who reflects your interests and values.
• It may be best to deal with the baby you have now, rather than the teenager or adult you fear you cannot cope with.
• The outlook for our children has improved greatly over the past generation so 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?
• Many families at first feel they don’t want their baby.
• Usually this feeling changes. Families get to know their own little baby who needs them rather than “this baby with Down syndrome with an unknown frightening future ”.
• Occasionally the feeling persists beyond the first few days. Sometimes it is best for the baby to be adopted. There are many families happy to adopt a baby with Down syndrome.

Will it happen again?
• Probably not.
• A geneticist can give you detailed figures, but for most families the chances of having another baby with Down syndrome are about one in two hundred.
• You can choose an amniocentesis in your next pregnancy to see if your baby has Down syndrome.