These help pages are drawn from my own experience, from the DSUK and other Downs Syndrome forums and from the experience of other parents. They are parent to parent help pages and are should not replace professional advice.
- There's nothing in this section because for now, all you need to do is treat your baby like a baby. Let them enjoy new experiences and do the same things as any other baby. Easy!
What do I do now?
First of all congratulations! You may feel like celebrating, but you may not. It doesn't matter; there is no "right" or "wrong" way to react to the news that your baby has Downs Syndrome. However, for most people, finding out your beautiful baby has Downs Syndrome is a shock. One minute you are looking at your newborn, full of plans and excitement for the future, and the next, someone comes along and tells you it's not going to be like that anymore. In that moment, your whole life seems to change. But it doesn't really. Behind label, your baby is the same, they're still there exactly as they were before you were told they have Downs Syndrome. Your most important job over the next few days, weeks or years is to break down that barrier and reconnect with your son/daughter as your baby rather than as "your Downs Syndrome". It might not feel like it but your old life hasn't gone away, it's still there. All your friends are still there. Your family's still there. Your baby is still there.
Everything you read, in books or on the internet (including this site) will make references to all sorts of conditions that are more common in children with Downs Syndrome. However, it doesn't mean your child will have any of them. I spent most of the first year of my son's life worrying about things that never happened. Life for people with Downs Syndrome has changes enormously in recent years, but for now, you don't even to worry about that. If you haven't already, read the 21 things I wish I'd known when my baby was born.
At the moment, your newborn is a baby and a baby with Downs Syndrome is still a baby and needs what any other baby needs. Some may need extra care; but so do lots of babies without Downs Syndrome. For now, your baby needs what every other baby needs; love, cuddles, contact, milk and to be warm, clean and dry.
There's a temptation to rush out and seek out therapies to help your baby from the word go, but don't feel you have to do it immediately. Just look after your baby in exactly the same way as you would if they didn't have Downs Syndrome. So, the great news is, you've got nothing extra to do at the moment at all!
You might find the following leaflet helpful:- The Downs Syndrome Association new parent's guide
When your baby is newborn, the best thing you can do to help is to do exactly what you would do for any other newborn baby. Your baby doesn't know he has Downs Syndrome, doesn't know anything about Downs Syndrome and doesn't care. All he wants is to be loved and cared for. Having a baby is a huge change and very tiring in any circumstances so over the next few weeks or months, do not hesitate to ask for help to give you time to recover your strength and adjust to the change in your life. The best way you can help your baby is to help yourself.
There's plenty of time for all the therapies and early intervention later on.
For me, this was one of the hardest things to do. I found everyone received the news in different ways depending on their own life experiences. In general I advise parents to tell close family as soon as possible. The longer you leave it, the harder it is to explain why you didn't do it earlier and as time moves on, more and more barriers build up and the harder it gets. If you can't face telling all your friends, tell a few close friends and ask them to pass on the news. A good ways to get the news out to wider circles of friends is to send a normal "new baby" letter in which you can explain that your new baby has Downs Syndrome. We said in our letter that we were shocked but still loved our baby and wanted our friends to accept him without fuss. They did.
I am writing this from the point of view of Mum, but I'm aware that Dads are just as likely to be reading this so the advice applies to both. I am planning to get my husband to write his side of the story, but for now mine will have to do. Remember that your partner's reaction to the news may be very different from yours. This is a time when it's more important than ever to talk to each other and not assume that they are feeling the same as you. Initial reactions vary from immediate acceptance to a parent walking out. There are just initial reactions and try to be forgiving if they aren't what you expect. Over the next few weeks make time to talk about how you are both feeling. Ask your partner what they are thinking (not to the point of being irritating!). Professionals often habitually speak to one partner (usually Mum) so try to make sure that Dad too gets a chance to attend some early appointments. This means that you have to talk to each other (so you both know what's happening) and avoids one person assuming full responsibility early on. If things get very tense then it can be very useful to speak to a counselor to sort out differences early on before they blow up into big problems.
As a new parent you may well be worried about medical issues. There are some medical conditions that are more common in people with Downs Syndrome, but your baby may have none at all. To be on the safe side, most modern hospitals carry out a number of medical test, often before your baby is a few weeks old. It can be alarming, but it's wise to do these as the earlier a complication is diagnosed, the more likely it is that it can be corrected. The most common problem in babies with Downs Syndrome are heart defects, which are found in about half of the babies born in the UK. Many of these resolve themselves, but some need treatment or surgery. If your baby does have a heart condition, do contact the Downs Heart Group who offer fantastic support and information - www.dhg.org.uk
Until recently it was widely assumed that babies with Downs Syndrome were unable to breast feed. This isn't true! But it doesn't mean you have to breast feed. I am firmly on the fence in the breast vs bottle debate and think that mothers should do whatever suits their situation best. I know plenty of adults and people with Downs Syndrome who have thrived on formula milk and mothers who've sent themselves into depression trying to breast feed an uncooperative baby. However, the experts all say "breast is best" and if you want to breast feed there is no reason at all why you shouldn't give it a go. Just like all babies, some with Downs Syndrome get the idea immediately and others take a while to work it out. If your baby doesn't get it immediately, do ask for help from your hospital/midwife/health visitor and don't let them tell you that babies with Downs Syndrome can't do it. If it takes a bit longer than you expected, persevere - our babies often do take longer to do things that other children, but they usually get there in the end.
Freddie was tube fed for 4 weeks and during that time I expressed milk for him. No one expected him to be able to breast feed but he latched on immediately! Many parent report that they find their babies fall asleep quickly while they're feeding so it's a good idea to make them a bit uncomfortable, for example, keep their legs bare (subject to the weather) and move around every now and again so they don't get too snoozy.