Prenatal testing and diagnosis Expand Prenatal testing If you are about to have, or are currently undertaking, prenatal tests, it is important you understand about the tests you are taking, what they can tell you and what choices you may have to make. We know that this may be a difficult time for you. In many countries screening for Down syndrome is offered to pregnant women of all ages. The tests you will be offered depend on how many weeks pregnant you are. A screening test can only provide you with information about the likelihood of having a baby with Down syndrome. Ultrasound scans can show signs that a baby has an increased chance of having Down syndrome. Certain blood tests can also detect if a baby is more likely to have Down syndrome. These include maternal serum screening tests and cell-free DNA testing (also called cfDNA or non-invasive prenatal screening (NIPT)). Compared to other screening tests, cfDNA testing can detect more of the pregnancies that have higher chances for Down syndrome. However, neither ultrasound nor blood tests can confirm a diagnosis. To confirm a diagnosis, chorionic villus sampling (CVS) or amniocentesis (tests that take samples of foetal tissue or fluid from the baby) needs to be carried out. It is your choice whether or not to take the tests. If you decide to take the tests, think about why you are taking the test, what the test can tell you and what choices you may have to make as a result of taking the test. It is important to source accurate, balanced and up-to-date information about Down syndrome. Information written by people with Down syndrome and their families can be particularly helpful. In many countries health professionals have received training to help women to make informed decisions that feel right for them. Explaining the diagnosis In some countries health professionals have received training on how to deliver and explain the diagnosis. Receiving news about a diagnosis can be overwhelming and families often cope with a range of emotions during that time. Some parents and families also appreciate learning that Down syndrome is a natural condition that usually happens by chance and is not caused by anything they did or did not do during pregnancy. In addition to the health and social services available in some countries, local, national and international Down syndrome organisations can provide information, advice and support if required.
New baby Expand Congratulations on the birth of your baby! If your baby is healthy, his/her needs will be just like other babies. You don't need to do anything different or special at this stage. We know it can be difficult at first to see past the Down syndrome to your baby's individual personality. Take time to listen to him/her, get to know and enjoy him/her. A loving secure environment is the most important thing that you can give your baby at this time. New parents are often concerned that their baby will miss out if they are not immediately providing some form of regular stimulation. We understand this feeling, it is very natural, but don't be hard on yourself. Give yourself time to adjust to your new baby. Interact with him/her. The rest can come later! Your baby's health Some health conditions are more common in children with Down syndrome. It is important that you are aware of this and if possible that your baby is screened for these. Some countries have systems in place to ensure this takes place, e.g. if you live in the UK your baby will have an insert for babies born with Down syndrome in his/her Personal Child Health Record (PCHR). This contains information about health screening, child development and weight and growth charts. Other countries will not have this. Local support Remember that too much information may be overwhelming at this stage and may never be relevant. We can provide you with a contact in your country who may in turn be able to connect you with a local parent support group. Meeting other parents locally can give you some much needed moral support and advice from like minded people.
Feeding babies Expand Do not assume that just because your child has Down syndrome that they will experience problems with feeding. Many babies with Down syndrome are able to breastfeed successfully from birth. Persevere if you want to breastfeed and remember it can take a couple of weeks to establish feeding with any baby. Seek support if necessary from health professionals. A few babies have medical problems which affect feeding. Babies with gastro-intestinal tract (GI tract) disorders who need an operation will not be allowed to feed at first and will get nutrients intravenously. Some babies with heart conditions may be unable to feed immediately because they are tired or breathless; mothers of these babies can express breast milk by hand or pump to build up their milk supply. Their milk can be given to their babies by naso-gastric tube when the babies are well enough. With patience, and following surgery for any medical conditions, these babies can often fully breastfeed eventually. Weaning your baby is likely to be much like weaning any other child, but sometimes they can be slower to learn how to suck, chew and swallow. Some babies with Down syndrome are particularly sensitive to different textures and prefer smoother foods and familiar flavours. As with any child, the priority is to provide a healthy and balanced diet. Ask a qualified professional, for example a health visitor or speech and language therapist with expertise in feeding, if you are worried or need advice on feeding and weaning.
Babies and young children Expand All babies and young children bring their joys and concerns. Having a baby with Down syndrome sometimes brings extra things to think about. Will they feed well? Are they healthy? When will they sit up, walk and talk? You probably already know that your child will take a bit longer to reach their developmental milestones. They will get there at their own pace. Development Your child will develop through enjoyable opportunities for interacting, moving and playing in their first years of life. As they get older they will continue to progress in all areas, helped by early intervention, by having their hearing and any other health needs met and, later, by being educated at school. Children with Down syndrome develop at different rates and in different ways – they have individual strengths, interests, talents and needs. They are helped by being socially included in their families, schools and communities. They are helped to learn new skills by being shown how to do them and by having enjoyable ways to practice. Like all children, they benefit from high expectations and support at home and at school. Intervention You may have heard people mention that 'early intervention' can help the development of children with Down syndrome. This can include speech and physiotherapy as well as home teaching programmes. There is now plenty of information that professionals and families can use to support children with Down syndrome to make the most of their strengths, address areas of difficulty, and develop the skills they need to get the most out of life. Every child with Down syndrome is different. Remember to try to have fun with your child and enjoy them, they grow up fast! The intervention that your child receives will depend on their needs and local availability. Ask your doctor, local health professional or local support network what is available in your area. If you cannot find any local services, please contact DSi and we will try to put you in contact with people in your country who may be able to help.
Early development Expand How can I help my baby develop? Enjoy the time you spend with your baby – this will help him/her to learn and develop. Get to know your baby, the things he/she likes and doesn't like, and respond to these. Let your baby know you are interested in his/her feelings, interests and needs. Talk with your baby, face to face. How do I do this? Your baby will show his/her interest by looking, making noises and moving his/her face and body. Your baby will need sleep and quiet times as well as lively, interactive times and you will get to know the signs when he/she needs these. Some of your baby's signs may be subtle at first, so try to respond even when you aren't sure what your baby wants, as you care for and touch your baby, and as your baby watches and listens. Spending time in face to face interaction with your baby is one of the best ways to help your baby learn. You can copy your baby's noises and expressions, exaggerate them, and wait for your baby to respond to you. You may need to wait a little for your baby to respond to you with a movement, wriggle, noise or expression, so be patient. Keep noticing and responding. As you get more practiced, you can show your baby new expressions, noises, things to touch and feel and see what your baby thinks of these – if he/she isn't keen, go back to following your baby's interests. Most new parents interact with their babies in this way quite naturally within the first few months. Play together At this stage your child will learn more from playing with you than they will from playing on their own or with other children. Follow your child's lead and support their learning in sensitive and responsive ways. Although much of this will happen naturally; you can always get tips from other parents, professionals and organisations in your country. Remember, not everything has to be Down syndrome specific. Any tried and tested ways that are used to help children who do not have Down syndrome will also help your child's development. Play often and have fun Playing frequently together, getting into your child's world, copying his/her play with your own toy that is the same as his/hers, repeating things your child enjoys, taking turns, showing your child you are having fun, being animated and playful are just some of the ways you can help your child learn. Show your child the next step if he/she seems ready As you play together you can show your child the next step and encourage your child to copy you. We know that children with Down syndrome learn especially well by being shown things. Toys, play positions and physical skills Your child may have small hands or arms, or not be quite as strong as other children. If so, look for small toys he/she can hold, 'cause and effect' toys that move easily - that don't need too hard a 'press' or 'pull' to make them work, and toys your child can reach to explore. Your child might play and learn more easily in some positions than in others. Getting a balance The demands of living with a young child can be overwhelming particularly when the fact that your child has Down syndrome may lead to extra appointments with doctors and therapists and anxiety in the early years. It's easy to become completely tied up with what is special or different about your child. It's important to strike a balance so that your needs and the needs of other family members are addressed. Remember that to some extent, all babies have to fit in with what is going on around them. While 'special' activities help, they are unlikely to be the main influence on your child's development. The most important experiences for a child with Down syndrome come from being a member of a happy, loving and active family – and from doing all the things that families normally do. Not everything has to be educational or meaningful. Let your child and the rest of the family relax, do something that has absolutely no educational function other than being fun.
Information for families, siblings and friends Expand If a family member or friend of the family has recently given birth to a baby with Down syndrome, you may initially feel concerned or confused as to what it is and what it will mean for your life and the lives of others you care about. It is important to seek balanced up-to-date information about Down syndrome to get a clearer understanding. A good insight can often be obtained from information written by people with Down syndrome or by their family members. First and foremost your friend’s/relative’s new baby has the same needs as all babies. They will eat sleep and cry and will need love and affection just like any other baby. The most important thing that you need to know about Down syndrome is that everyone with the condition is a unique individual. The one constant is that every child with Down syndrome will have a certain level of learning disability. The learning disability affects a child’s ability to learn compared with other children of their age, it does not mean they cannot learn. Children with Down syndrome generally take longer to reach developmental milestones and they will need some additional support. The way the syndrome affects a person’s development, learning and health varies widely. The level of support that a person with Down syndrome needs as they grow up and throughout their lives will be different from person to person. In some countries the quality of life, life expectancy, role in the community and life opportunities for people with Down syndrome have gradually been transformed as education and support have improved. However, we still have work to do to ensure that people with Down syndrome have many of the same life chances that the general population take for granted, especially in developing countries. As a sibling, growing up with a brother or sister with Down syndrome can be a mix of good and bad experiences and emotions. Many siblings say their brother or sister with Down syndrome has made their life better. All siblings, however, sometimes need a little extra understanding and support. How you can help It will come as no surprise that any new parent appreciates congratulations and being told how beautiful their baby is. Your friends/family are no different. Meet the new baby, get to know them and hold them. If the new parents have other children, don’t forget to make a fuss of them too so they don’t feel left out. As with any new baby, let the family know that you are there to offer support as their new baby grows up.