Expecting a baby
If you’ve recently been told there’s a high likelihood your baby has Down syndrome, or you’ve had a confirmed diagnosis, you may be feeling overwhelmed, confused or uncertain about what the future holds. At Down Syndrome UK we understand, and we are here for you; you are not alone.
We are here to support you throughout your pregnancy and beyond, when baby arrives our care and support continues. We are parents who understand the reality of parenting a child or young person with Down syndrome, and we know that while there may be challenges – as there are for any parent – we also know and are proud to say that our children and young people are loved, valued members of our families and communities who we would not be without. So, do please take a read of our stories to see that while many of us had worries and concerns, we now lead happy and ordinary lives.
Skip ahead
A good place to start
Many parents tell us that one of the most helpful things they did was connect with other families and hear from people with lived experience.
#NobodyToldMe
Written by people with Down syndrome, parents, siblings, grandparents and friends, it’s the book many of us wish we’d been given when our children were born.
A glimpse of family life
Watch our short film, which offers a glimpse into family life today.
Family stories
Real stories from families who once had the same worries and questions you may have now.
Connect with other families
Whether you’d like to ask questions, read about others’ experiences or simply know that you’re not alone, you’ll be very welcome.
Great expectations group
A warm and supportive Facebook community for expectant parents. Once you join, Michelle will send you a welcome message and offer to post you a copy of #NobodyToldMe.
Dads-to-be group
A dedicated support group for dads, because we know they need support too.
Free welcome sessions
Informal online sessions for expectant and new parents to meet our team, find out about the support available and ask any questions. Details are shared each month in Great Expectations.
Your questions answered
Answers to the questions expectant parents ask us most. You don’t need to read them all today and if you had any questions that aren’t listed below, we welcome you to ask in our closed Facebook groups.
SUPPORT FOR YOU
Where can I get emotional support?
You don’t have to go through this alone. Our private Great Expectations group is a safe space for parents in the UK who have a high chance or confirmed result that their baby has Down syndrome. You can ask any question, share any worry and, when the time comes, celebrate your baby’s arrival.
The group is supported by parents who are also midwives, a paediatric nurse and a neonatal nurse, as well as parents with a wide range of experiences of finding out their baby has Down syndrome.
We also fund one-to-one counselling with an experienced, independent counsellor for members of Great Expectations and our New Parents group who are finding things particularly hard, and we run small group sessions that parents tell us they find really helpful.
What support is there for dads and partners?
We have a dads-to-be group, a quieter space with dads on hand who are now parents of children with Down syndrome. Some of them struggled in the early days too and understand any worries you may have.
Once your baby arrives, dads can join our monthly online sessions to learn the Makaton signs for a book, and a WhatsApp group.
How do I find out everything I need to know?
Take things one step at a time. Our Little Orange Book of Knowledge (also known as “You don’t know what you don’t know”) is a practical guide you can dip in and out of as and when you need it.
Our online groups are full of information and support too. If you can’t find what you need, just ask. We’re only ever a message away.
YOUR PREGNANCY AND BIRTH
Will I need any extra care during pregnancy?
We worked with St George’s University Hospital and the Down’s Syndrome Research Forum to develop an antenatal care pathway. It sets out the recommended additional care for you and your baby, and we’d strongly recommend sharing it with your maternity team.
What happens when my baby is born?
Your baby will have all the routine newborn checks. Depending on the results, some babies need extra support in the neonatal unit (NICU or SCBU) and many don’t. Many babies go home in the same timescale as babies without Down syndrome.
- Within the first six weeks, your baby should have a formal heart assessment, including a scan of the heart called an echocardiogram.
- Some babies are more prone to jaundice and may need phototherapy (light treatment).
- Many babies have low muscle tone (hypotonia), which can affect feeding. Some babies need help with feeding through a nasogastric (NG) tube for a while. If you’d like to breastfeed, you can express your milk for your baby.
- Babies who need oxygen or have low muscle tone may need a car seat that lies flatter. See “Do we need to buy anything special?” below.
As a parent you have the right to decide how your baby is cared for. If anything is unclear, ask for it to be explained again until you’re happy you understand.
Will I be able to breastfeed my baby?
Many babies with Down syndrome are breastfed. When we surveyed over 300 parents, most who wanted to breastfeed had done so. As with any baby, for some it was straightforward and for others it took time to establish.
If this is how you’d like to feed your baby, we’re here to help. Our Breastfeeding Supporter, Sarah, is available to chat, and we have a private group for parents who are breastfeeding. Read our breastfeeding guide or visit our feeding page.
YOUR BABY'S HEALTH
What if my baby has a heart condition?
Around half of babies with Down syndrome are born with a heart condition. Most don’t need any treatment. A smaller number (around 15 to 20%) need surgery, which for most babies with Down syndrome is considered routine, and there are specialist centres across the UK.
Your baby’s heart will be checked during pregnancy and again after birth. We know this can be a big worry, so we’ve collected parents’ heart stories. If your baby does need surgery, our Heart Buddies can support you before, during and after. Find out more on our heart page.
What does it mean to have Down syndrome?
Down syndrome is a naturally occurring genetic difference caused by an extra copy of chromosome 21. It’s also called Trisomy 21. Babies with Down syndrome are born to parents of all ages and backgrounds, all over the world.
People with Down syndrome are more likely to have some common health conditions, and, like everyone, they benefit from advances in healthcare. They’re living longer, healthier lives than ever before.
People with Down syndrome have some level of learning disability. That doesn’t mean they can’t learn; it usually means it takes longer to learn new skills. With the right support, most children reach the usual childhood milestones in their own time.
Visit our “What is Down syndrome” page for more.
Will my baby look like me?
Yes. People with Down syndrome share some physical features, but a child with Down syndrome looks more like their parents and brothers and sisters than like other children with Down syndrome.
FAMILY AND FRIENDS
How do we share the news with family and friends?
This is very personal, and there’s no right or wrong way. In our experience, family and friends tend to follow your lead, so if you share the news in a positive way, you’re likely to get positive responses.
Some parents tell people as and when they see them; others share a post on social media. Do what feels comfortable for you and your family.
Parents have shared their tips in this blog. Have a read to find out more.
How might it affect our other children?
Many parents worry about this, and research is reassuring. In a large study of 822 brothers and sisters, more than 96% said they felt affection for their sibling with Down syndrome and 94% of older siblings said they felt proud of them.
You can read stories written by siblings and grandparents in #NobodyToldMe.
Source: Skotko, Levine and Goldstein, American Journal of Medical Genetics, 2011.
What support is there for grandparents?
We support the whole family. Our grandparents group is for both grandparents-to-be and those already enjoying life with a grandchild with Down syndrome, and we run Makaton courses especially for grandparents.
How can I support a friend who is expecting a baby with Down syndrome?
How can I support a friend who is expecting a baby with Down syndrome?
You’re already being a good friend by reading this. Carry on as you would anyway: ask questions, take an interest and congratulate them, because a new baby is something to celebrate.
- Acknowledge that your friend may be feeling worried, especially as there’s still a lot of outdated information around.
- Let them know about our Great Expectations group, or our New Parents group once the baby has arrived.
- Hear from people with Down syndrome on our self-advocates page.
Most of all, let them know they’re not alone. They’ve got you, and they’ve got us.
Will I cope as a lone parent?
Many parents in our community are on this journey as lone parents, some by choice and some not. Friends and family matter even more, and parents tell us the DSUK community gives them encouragement, support and someone to celebrate every milestone with.
As one parent shared: “The DSUK community provides a wealth of knowledge and support in the early days when I really needed it. There is no judgement, just offers of help and support.”
LOOKING AHEAD
What will life look like as a parent of a child with Down syndrome?
No one can predict the future for any child. Parenting any child brings rewards and challenges, and parenting a child with Down syndrome is the same. Many parents tell us they celebrate milestones even more, because they know how hard their child has worked to reach them.
In a large study of 2,044 parents, 99% said they love their child with Down syndrome, 97% said they are proud of them and 79% said their outlook on life is more positive because of them.
Where there are frustrations, parents tell us they’re mostly about systems and services, not their child. Things are changing for the better: we were proud to be closely involved in the Down Syndrome Act 2022 in England.
Source: Skotko, Levine and Goldstein, American Journal of Medical Genetics, 2011.
What support is there for my child's development?
Support varies from child to child and across the country. Where local services are limited, we can help:
- Online physiotherapy advice and support from birth. See our physical development page.
- PADS Early Development Groups (PEGS) from around six months, with everyday activities to do at home.
- Our Little Orange Book of Knowledge, which explains what support is available and when.
There’s no need to know it all now.
Will my child be able to go to our local school?
More and more children with Down syndrome go to their local mainstream school, and others thrive in special schools. Your child should be able to get support throughout their education, set out in a legal plan. In England this is an Education, Health and Care Plan (EHCP).
This is a way off yet, but we’re here to help when the time comes.
PRACTICAL HELP
Do we need to buy anything special?
Most parents tell us they haven’t needed anything special, and equipment from older children or relatives is usually fine.
- A few babies need a car seat that lies flatter. Parents recommend the Cybex Cloud Z or the Joie i-Level Recline.
- Many parents love the Shnuggle bath, designed by parents of a child with Down syndrome.
- As your baby grows, a more supportive high chair can help. Some local authorities provide specialist seating, so it’s worth asking.
Is there any financial support?
Yes, families of children with Down syndrome are usually entitled to some financial support. Disability Living Allowance (DLA) can be paid from when your baby is three months old, for children who need much more care than other children of the same age. You may then be able to claim Carer’s Allowance, and Universal Credit may increase.
Contact has clear information on the benefits you may be entitled to.
How do I find other families near me?
There’s a network of local support groups across the UK, alongside our online groups. Many families make lifelong friends this way.
A note from Nicola, our founder
“My son Tom is a young adult. He makes my heart burst with pride every single day and has brought far more joy, laughter and adventure to our family than I could ever have imagined.
Like every young adult, he has his own interests, strengths, challenges and ambitions. Life hasn’t always followed the path I imagined when he was born, but it has been a wonderful journey.
Every child with Down syndrome is unique, and every family’s journey is different. We’re here whenever you’re ready.”
Nicola Enoch / Founder and CEO, Down Syndrome UK
Guides and resources
Resources covering screening, diagnosis, birth, feeding and support, including a guide written specifically for expectant parents.
Things we wish we'd known
Parents share what they wish they’d known before their child arrived, from everyday family life to what to really expect.
Little Orange Book of Knowledge
A practical guide for new parents, built around “you don’t know what you don’t know”.
Antenatal care pathway
Recommended additional care during pregnancy, to share with your maternity team.
We’re only ever a message away
If you have questions or would like to talk, we’re here.