You will never forget the moment you find out your baby has Down syndrome.
- Our families say the moment remains crystal clear in their memories. They are able to relive it even twenty years later as though it happened yesterday;
- People react in many different ways. You may feel overwhelming sadness, you may feel too numb to react much at all;
- Do not assume your partner is experiencing this the same way as you;
- It is OK to react in whichever way you do;
- Your partner’s way of coping is OK too;
- You are not alone, other people have felt this way before you;
- In time most people adjust to the news. Their baby becomes a well-loved member of their families, just part of their everyday lives.
First Questions you may have
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?
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?
- Down 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.
- Don’t be afraid to involve your children as soon as possible. It’s OK to show them you hurt - they realise that already.
- Tell your children 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.
- Your children will follow your lead. If you treat the Down syndrome as just one aspect of your baby’s life, your children will too.
- You could read the ‘Welcoming your baby’ leaflet together or a specially written book.
- You could say something like
- “Mummy and daddy are sad because we wanted a baby like most other babies and our baby has Down 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 syndrome.
- Babies with Down syndrome find it hard to learn new things.
- The baby will always have Down syndrome.
- You can’t catch Down syndrome.
- Brothers and sisters are very important to a baby.
- We love you very much and we love the baby too.
- 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.
- Give your family and friends copies of the NZDSA leaflets “Welcoming your baby” and “I don’t know what to say”. You can get extra copies by phoning 0800 NZDSAI (0800 693724).
- You may find you are very sensitive to people you meet when you are out and about.
- Sometimes you may not be sure if other people realise your baby has Down syndrome. You can choose whether or not to mention it.
- 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 syndrome, they will be too.
- This is a general simple guide. Everyone is different.
- Most new parents go through a grief process as they would if their baby had died. In a way your baby has died; the dream baby you imagined for nine months or more; the baby without Down syndrome.
- But it is different to having a stillbirth because you have a living baby needing love and care. So in addition to the grief for the loss of your dream baby, you develop feelings of love and joy for your 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 syndrome seems unimportant) but cannot be avoided.
- Throughout your child’s life there are likely to be occasions when you revisit these feelings of grief, but most parents say the pain of the early days is the hardest.
- Many different feelings are part of grief.
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 a 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 syndrome, I can live with that”
Most people don’t work through these feelings in order. They experience them all at once and revisit them again and again.
Looking After Yourselves
Your own health is vitally important.
You are going through one of the most stressful times of your life.
Suggestions from other parents are:
- Let yourself cry
- Expect good and bad days
- Rest - you are like all new parents who have just had a baby
- Get to know your baby - cuddle your baby, breast feed, take photos
- Spoil yourself with 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
- Take time out - visit somewhere peaceful or just forget about Down syndrome for a while
- Talk to another parent - phone a support parent from the NZ Down syndrome association on 0800 693724. 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 journal, or express your feelings in art or music
What is early intervention?
- Early intervention is professional assistance given to parents, carers and their young children. Therapists help our children learn through play.
- Therapists almost always work as part of a team. Different therapists have different specialist areas. Together they cover all aspects of our children’s development.
- Often therapists offer assessment and advice, and suggest home programmes for parents or caregivers to carry out with the child.
How do I get early intervention ?
A member of your health-care team can refer you to your local early intervention services. You may be seen in your home or in a centre.
Who is in an early intervention team?
Our babies often see
- visiting neuro-developmental therapist -VNT
- speech-language therapist –SLT
- early intervention teacher
The team may also include paediatricians, health-care nurses, support services, dieticians, play therapists, physiotherapists, occupational therapists, psychologists, social workers and music therapists.
What do visiting neuro-developmental therapists do?
work with muscles and movement, children’s growth, development, and everyday living.
teach parents and carers skills and exercises to assist learning and development.
What do speech-language therapists do?
- assist with any feeding problems.
- help with early communication through play.
- can teach us about the use of signing as our children find it easier to learn to talk if main words are signed.
What do early intervention teachers do ?
- provide advice about building onto children’s strengths to ensure they reach their potential as they learn and develop.
- support parents and family in the home and early childhood centre.
- support teachers to fully include our children into the early childhood setting.
- help plan children’s transition to school.