My baby has Down’s syndrome. What does that mean and what can I do?
You've given birth and been told your new baby has Down's syndrome. What does that mean, and what do you need to know about it?
Down's syndrome is a life-long condition that causes delays in learning and development. It occurs because your baby's cells contain an extra chromosome 21.
Is it my fault?
Down’s syndrome is not anyone’s fault, it just happens. It has never been linked with particular foods or actions or pollution, and 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, but they shouldn’t!
How can doctors tell my baby has Down's syndrome?
Doctors can usually tell that children have Down's syndrome when they examine them and notice certain physical characteristics.
Babies are usually floppy and have very flexible joints. This will improve as they get older. They usuallly 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 (called an 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 also 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 no 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 your 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.
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, 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.
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. Many 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 Down's syndrome 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.
Is my reaction normal?
Everyone is different
Many new parents go through a grief process as they would if their baby had died. The dream baby you imagined for nine months or more, the baby without Down's syndrome, is not there.
But it is different because you still have a baby needing your love and care. So in addition to the grief for the loss of your dream baby, you develop feelings of love and joy for the actual baby. The baby who was the problem becomes the solution.
Grief is a healthy reaction to loss
The strength of your reaction depends on how big the loss seems to you. Grief is hard work and it hurts. It can be delayed (maybe your baby is very sick and Down's syndrome seems unimportant) but it cannot be avoided. Throughout your child's life there are likely to be times when you revisit these feelings of grief and sadness but most parents say the pain of the early days is the hardest.
Denial is a common first reaction
You hear the news and think, “this isn't really happening” “this only happens to other people”. It cushions the blow and protects you for a while until your body is better able to cope with the news.
Anger may be generalised rage at the world or a more personal “Why me?”
“How dare this happen to me?” You may be able to channel your anger into doing something to help your child.
Bargaining is that feeling of “If I do this I can make it better”, a time where guilt and responsibility may be strongly felt
It may lead to a change in priorities in your life.
Depression is an intense and overwhelming feeling of helplessness and sadness
“My world is falling apart.”
Acceptance creeps in as you start to think, “So my baby has Down's syndrome, I can live with that."
Most people don't work through these feelings in order. They may experience them all at once and revisit them time and time again. Your partner may well react differently to you.
Looking After Yourselves
Your own health is vitally important.
Any birth brings with it a complicated mixture of physical and emotional reactions. In addition to experiencing all of these, you are also coming to terms with your new baby with Down's syndrome.
Expect good days and bad days and let yourself cry if you need to.
Rest. You need rest like all new parents who have just had a baby.
Spoil yourself. Enjoy your favourite treats. Get information. Fear of the unknown may make things harder, ask questions, BUT only read information that helps you, don't get overwhelmed.
Allow yourself time to heal. Your feelings will change, things will get easier.
Get to know your baby. Cuddle your baby, breast feed, take photos.
Take time out. Visit somewhere peaceful or just forget about Down's syndrome for a while.
Talk to another parent. The DSA can give you information about your local parent support group. Picking up the phone that first time can be very hard, but it really helps to talk to someone else who's been through it.
Ignore unhelpful comments. Even if they're from people close to you!
Write a diary. Or express your feelings in art or music.
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The Down's syndrome Association has a wealth of advice to offer.