Down Syndrome (Frequently Asked Questions) provided by the Down’s Syndrome Association

Down Syndrome (Frequently Asked Questions) provided by the Down’s Syndrome Association.

FACTS

Around one in every 1000 babies born in the UK will have Down’s syndrome.

- One to two babies are born with Down’s syndrome every day in the UK alone.

- There are 60,000 people in the UK with the condition.

- Although the chance of having a baby with Down’s syndrome is higher for older mothers, more babies with Down’s syndrome are born to younger
women.

- Down’s syndrome is caused by the presence of an extra chromosome in a baby’s cells. It occurs by chance at conception and is irreversible.

- Down’s syndrome is not a disease. People with Down’s syndrome are not ill and do not “suffer” from the condition.

- People with the syndrome will have a degree of learning difficulty. However, most people with Down’s syndrome will walk and talk and many will read and write, go to ordinary schools and lead fulfilling, semi-independent lives.

- Today, people with Down’s syndrome can look forward to a life of 60 years plus.

What can parents do to make life as normal as possible with a child with Down’s syndrome?

Children with Down’s syndrome do learn to walk, talk and be toilet trained but in general will meet these developmental milestones later then their ordinary peers. Early intervention programmes which are now widespread for children with learning disabilities help in all areas of child development. These programmes can include speech and physical therapy as well as home teaching programmes for the child and family. Children and adults with Down’s syndrome can and do continue to learn throughout their lives just like the rest of the population. With good medical care and the right levels of support,people with Down’s syndrome can and do make friends, go to school and college, find and keep a job and make decision about their lives and futures.

What can children with Down’s syndrome achieve?

A child with Down’s syndrome can achieve the same as other children it will normally take them a little bit longer to develop all the milestone skills. A few children will have additional heath problems which may slow w their development. However all will continue to develop at their own pace. Children with Down’s syndrome will walk, talk, read, play, love, laugh, dream, achieve personal goals and be immersed in life just like their peers.

Life expectation for a child with Down’s syndrome

In the past it was believed that there were many things that people with Down’s syndrome could do no when in fact they had never been given the opportunity to try. Today these opportunities have never been greater with many people with Down’s syndrome leading rich and varied lives. People with Down’s syndrome are now leaving home, forming relationships, gaining employment and leading semi-independent and active lives with differing levels of support. The quality of life, life expectancy and role in the community for people with Down’s syndrome has been transformed as education, support and opportunities have improved.

I have a lovely new baby who has Down’s syndrome, will I be able to breastfeed my baby?

It is very likely that you will be able to breastfeed your baby. Most babies with Down’s syndrome learn to breastfeed very well but you may need some extra help to begin with. Local National Childbirth Trust branches have breastfeeding counsellors who will be pleased to help. It doesn’t matter if you are not a member, they will be pleased to hear from you. Often babies find that their low muscle tone means that they have to work very hard to suck hard enough and for long enough to receive a full feed. It helps if you support your baby’s chin with the forefinger of your spare hand whilst they are on the breast. Babies can often get a better latch if they are placed in the ‘football hold’ position. This is where the baby’s feet are under your arm and their head is supported by your hand. This way you can help your baby to stay on the breast. Be prepared to feed ‘little and often’ to overcome the fatigue problem. It may help if you begin the feed by expressing some milk to get the flow going for your baby. Be prepared to offer supplementary breast milk feeds if your baby does not gain sufficient weight but remind your health care team that your baby may not gain weight as fast as usual anyway. If you do have to offer supplementary feeds consider using a ‘lactaid’ device which allows you to breast feed at the same time. Contact National Office or the NCT for more information on this aid if you would like to try it.

I have been told my new baby will find it hard to learn to talk, is this right?

All children with Down’s syndrome find it hard to learn some aspects of learning speech, language and communication. Some children experience severe speech and language problems whereas other children find it less of a challenge. Some children will have more difficulty with developing their grammar; others will find it hardest to develop clear speech. We know that children with Down’s syndrome have a predictable profile of communication difficulties and this helps us to tackle these difficulties from an early age, offering them the best possible start to develop good communication skills. Whilst we know what their challenges are likely to be, we are also beginning to understand what we can do to help.

What can I do to help my young baby learn to communicate?

For a young baby, let’s say up to around 9 months of age, the most important thing we can do is to offer them good quality experiences and talk to them about the world around them. When we talk to our baby it helps if we show them what we are talking about and begin to use simple gesture. Help your baby to hold objects and to place items in their line of vision. Make sure that your baby’s hearing is carefully checked and that their vision is reviewed as soon as possible. Keep in mind the typical milestones, so for example, if your baby is six months old but not yet sitting independently, sit her up in a little chair so that she sees the world like all babies of her age. When the phone rings, don’t be tempted to leave her lying contentedly on the rug, take her with you so she sees what that funny noise was all about. Most importantly, spend as much time as you can enjoying her company: playing, talking, touching and cuddling. Make your baby feel loved and her confidence will help her grow into a confident communicator as she grows. As your baby grows support her hands to make simple gestures and ‘interpret’ her hand movements and eye contact as communications. For example, a waving hand can be interpreted as a gesture for ‘drink’: produce a drink and say that’s what she asked for – your baby will soon catch on!

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 children have Down’s syndrome when they examine them and notice certain physical characteristics. Babies with Down’s syndrome are usually floppy (have hypotonia) and have very flexible joints. This will improve as they get older. Usually they 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 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.

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.

What will a baby with Down’s syndrome achieve and when?

Children with Down’s syndrome do learn to walk, talk and be toilet trained but in general will meet these developmental milestones later than children who do not have Down’s syndrome. There is a wide range of ability in children with Down’s syndrome just like in the rest of the population. Each baby is different but generally babies with Down’s syndrome:

Smile between 1 and a half and 4 months, average 2 months / Roll over between 4 and 22 months, average 8 months/ Sit alone between 6 and 28 months, average 10 months / Crawl between 7 and 21 months, average 12 months /Finger feed between 8 and 28 months, average 12 months / Say first words between 9 and 31 months, average 16 months / Walk between 12 and 65 months, average 24 months

Like all babies, babies with Down’s syndrome learn and develop, but their development is slower than that of other children. Like all parents we should enjoy our children and celebrate their achievements. Although much of our children’s development rate depends on their individual make-up, we can help them through play, everyday activities and early intervention programs which develop their skills in small steps.

What learning problems do babies with Down’s syndrome have?

Children with Down’s syndrome often have short arms and legs and low muscle tone making it harder to learn the skills of moving. They find it hard to learn through their ears and learn better through their eyes. They find it easier to learn to talk if their main words are signed as well as spoken. They find it hard to “just pick things up” and easily forget new skills. Patiently repeating tasks helps them learn. They may find change hard. Regular routines, doing tasks the same way can be helpful.

What is the most important thing I can do to help my child’s development?

Start by loving them! Everything else comes after that. Make them feel loved and secure so that they grow up feeling good about themselves. Don’t forget to look after yourself. Also it may be helpful to talk to other parents who will have been through what you are experiencing.

Early intervention

Early intervention programmes which are widespread for children with learning disabilities help in all areas of child development, as well as providing support to the family. These programmes can include speech and physiotherapy as well as home teaching programmes for the child and family. Being part of an early intervention programme also provides families with opportunities to find out about the syndrome, and to meet other families in similar situations and share support. During the past 30 years, extensive research has taken place looking at how people with Down’s syndrome learn, and which skills are particularly challenging. There is now plenty of information that professionals and families can use to support children with Down’s syndrome to capitalise on their strengths, address areas of difficulty, develop the skills they need and to get the most out of life. Children and adults with Down’s syndrome can and do continue to learn throughout their lives just like the rest of the population.

ABOUT THE DOWN’S SYNDROME ASSOCIATION (DSA)

The DSA is the only organisation in the UK focusing solely on all aspects of living successfully with Down’s syndrome. Since formation in 1970 we have grown from being a local parent support group to a national charity with over 20,000 members. In a year, the DSA responds to around 21,700 telephone enquiries from members, professionals and the general public, they send out more than 21,000 leaflets and fact-sheets and receive around 300,000 unique vistors on the website. The DSA has 126 local affiliated groups throughout England, Wales and Northern Ireland as well as offices in South London, Cardiff and Belfast, plus a team of regional staff supporting families and professionals throughout most of England, Wales and Northern Ireland. The DSA relies almost entirely on voluntary donations to continue operating.

If you need further information regarding Down’s syndrome please feel free to contact Down’s Syndrome Association on 0845 230 0372 or visit our website www.downs-syndrome.org.uk

About Monica Costa

Monica Costa founded London Mums in September 2006 after her son Diego’s birth together with a group of mothers who felt the need of meeting up regularly to share the challenges and joys of motherhood in metropolitan and multicultural London. London Mums is the FREE and independent peer support group for mums and mumpreneurs based in London http://londonmumsmagazine.com and you can connect on Twitter @londonmums

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