I'm pregnant and have been told that my baby has Down’s syndrome. What does that mean?
Down’s syndrome is a genetic condition, resulting from an extra chromosome. Usually, a baby receives 23 chromosomes from each parent, making 46 chromosomes in each cell in total. Babies with Down’s syndrome have an extra copy of chromosome 21, so each cell contains 47 chromosomes. This extra genetic material results in Down’s syndrome.
There are three types of Down's syndrome:
Trisomy 21 - in which all the cells in the body have an extra chromosome 21. About 94% of people with Down's syndrome have this type.
Translocation - in which extra chromosome 21 material is attached to another chromosome. Around 4% of people with Down's syndrome have this type.
Mosaic - in which only some of the cells have extra chromosome 21 material. About 2% of people with Down's syndrome have this type.
As yet, no one knows what causes the presence of the extra chromosome 21. It can come from the mother or the father. There is no way of predicting whether a person is more or less likely to make an egg or sperm with an extra chromosome. What we do know is that nobody is to blame. As far as we know, nothing done before or during pregnancy causes the syndrome.
All babies born with Down’s syndrome will have some degree of learning disability. The learning disability significantly affects a child's ability to learn compared with other children of their age - it does not mean a child cannot learn at all. Generally, they will be able to meet many of the same milestones as their peers, but will do so later.
About one baby in every thousand is born with Down's syndrome. Down's syndrome is one of the most common causes of learning disability.
You will probably never forget the moment you found out that your baby has Down's syndrome. Families say the moment remains very clear in their memories.
People react in many different ways. You may feel overwhelming sadness, or you may feel too numb to react at all. Do not assume that your partner, if you have one, is experiencing this the same way as you. It is okay to react in whichever way you do and your partner's way of coping is okay too.
You are not alone. Other people have felt this way before you. In time most people adjust to the news and their baby becomes a well-loved member of their families.
Evidence from research shows that many families who receive a pre-natal diagnosis find that they are able to use the time between diagnosis and the birth of their child to adjust to their new situation. By the time of the birth of their child, many families will find that they have adjusted to the fact that their child has Down's syndrome and they are simply looking forward to the birth of their new baby. This experience is different from families who receive a post-natal diagnosis and who have to adjust to a new baby who has Down's syndrome.
I think I’ll be okay once the baby’s here, but I’m finding the pregnancy very hard…
As with any pregnancy, it is important that you look after your physical and mental well-being. Because of your situation you may find that the routine antenatal care, which is an important part of your pregnancy, is inappropriate or insufficient for your needs. Not all health professionals you come into contact with will be well informed about people with Down's syndrome. You may want to discuss with the health professionals involved who will be your lead carer - the one you can turn to for support for yourself.
Attending antenatal classes with other parents-to-be who do not have a baby with Down's syndrome might be difficult for you. Some parents choose not to attend such classes and therefore need other ways to prepare for the birth of their baby; do discuss your needs with your midwife or lead carer. If you do not feel like attending check-up at your local hospital, you can arrange for the check-ups to be carried out by your family GP.
Talking with other parents who have a child with the same condition can be a source of help and comfort at this time. They can answer many of the questions surrounding the reality of living with a baby or child with a particular condition. The DSA can put you in touch with your local parent support group. Some parents worry that their baby with Down's syndrome will need special equipment and toys; this is not the case!
Some thoughts about telling others
Don't be afraid to involve your children as soon as possible. It's okay to show them that you hurt - they probably 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.
- 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.
- Sometimes family, friends and people you meet say insensitive and hurtful things. Try to ignore these
comments. They are usually based on ignorance and misunderstandings. Our experience is that most
parents receive positive reactions!
What other parents say
The Down’s Syndrome Association asked new parents to share their experiences of receiving a pre-natal diagnosis. Here are some of the things they said:
“I wish I had known more about Down's syndrome before I got the amnio. Down's syndrome is made out to be an AWFUL thing, much worse than it really is and the general level of ignorance that is common just fuels that.”
“You will have several difficult months before your child is born, when all you have is a medical condition - not a child. When your child is born, you will have a baby to love and care for, and get to know, as well as the medical details that precede the birth. It is easier to love a child than a medical condition!”
“I can only describe how much joy my son has given me. Although the first year was a challenge and there were low points. My son is a happy, funny little boy who always makes people smile. Looking back I shouldn't have worried that I could not cope or think I would not be a good parent to a child with Down's syndrome. I shouldn't have worried so much! My own selfishness was the only barrier to loving my child.”
People will follow your lead. If you are open, honest and positive about Down's syndrome, they will be too!