Frequently asked questions - Expecting a baby

Our closed Facebook group Great Expectations is exclusively for women in the UK who have a high chance or confirmed result of baby having Down syndrome; a safe space where you can ask any question, share any concern and celebrate the arrival of your baby. We have a fabulous team on hand with mums who are also midwives, a paediatric nurse and a neonatal nurse, as well as mums with a range of experiences around discovering baby has Down syndrome, and how they received that news. 
You are not alone, we are here to hold your hand and provide you with the information and support you may need, as and when…
PADS funds 1:1 counselling with an independent highly experienced counsellor to members of our Great Expectations and New Parents groups who may be particularly struggling.  We also offer small group sessions which parents’ feedback as being extremely helpful and beneficial. 

We offer support to our Dads to be too – a relatively quiet group, with dads on hand who are now parents to children with Down syndrome, some of whom struggled in the early days and understand any worries or fears you may have.
When baby arrives, we have monthly online sessions for dads to meet and learn the Makaton signs for a book.  And we have a WhatsApp group dads can join.  

DSUK has developed an antenatal care pathway with St George’s University Hospital and the Down’s Syndrome Research Forum.  We would strongly recommend that you share this with your maternity team.  This sets out recommended additional care for you and baby.

It is estimated that 50% of babies with Down syndrome are born with a heart defect.  We don’t know how this compares to the typical population, since other babies are not generally checked.  Of the babies who do have a heart defect, the majority do not require any intervention.  It is estimated 15-20% do require medical intervention – which can include key hole or open heart surgery.  For most babies with Down syndrome, the surgery required is considered routine and there are centres of excellence across the UK where your baby will be well looked after.  

Since baby has a high chance/confirmed result of having Down syndrome, baby’s heart will be checked thoroughly when they are born, and through your pregnancy.  We know that this can be a huge worry for expectant parents.  We have compiled a selection of parents’ stories around their Lived Experiences which we hope will provide you with information you may find helpful and reassuring.  When baby arrives and it is confirmed that they have Down syndrome, if not already, baby will undergo an ultrasound scan of the heart called an echocardiogram.  If baby does require any surgery, PADS has Heart Buddies who will support you before, during and after little one’s surgery.  

We can offer you ongoing support around breastfeeding, so if this is how you wish to feed your baby, please know that we are here to provide you with information and support.  We conducted a survey in 2021 of over 300 mums and discovered that the majority who wanted to breastfeed had done so.  As with any breastfeeding journey, for some it was straight forward, for others it took time to establish.  You may enjoy reading some breastfeeding journeys we have collected in our publication Lived Experiences – Breastfeeding.
We have a closed Facebook group exclusively for those who are breastfeeding their baby where you can chat with other mums currently breastfeeding and those who may have now stopped but remain to share their experiences and offer advice.  PADS employs a Breastfeeding Supporter, Sarah Ojar who is available to chat/message and offer information and advice.  

Down syndrome is a naturally occurring genetic difference caused by an extra chromosome. Babies with Down syndrome are born in every country to parents of all ages, races, religions and backgrounds.  
The condition is also known as Down’s syndrome and as Trisomy 21.
Down syndrome makes people more prone to some common health conditions, but like the rest of society benefit from medical advancement and are now living longer and healthier lives. Routine heart surgery means that the small number of babies who require surgery do very well and are generally home within a week or two. Through improvements in education, research and understanding, babies, children and adults with Down syndrome can live full, rewarding and increasingly independent lives. 
People with Down syndrome have some level of learning disability and with the right support, most will meet the usual childhood milestones and can make good progress at mainstream school. Having a learning disability does not mean a person can’t learn, it generally means it takes longer to master new skills.  And as with the rest of the population, the majority of children with Down syndrome become life long learners.  
It is perfectly natural for parents to sometimes worry about their pregnancy and baby. Having a baby with Down syndrome may initially bring some extra concerns but there should be excellent support from midwives, paediatricians and therapists. You will also be entitled to financial assistance. Local and online support groups are here to help you – to share the highs and lows of raising our children – you do not have to do this alone.

Whilst people with Down syndrome share some physical characteristics, a child with Down syndrome looks more like their parents and siblings, than other children with Down syndrome.  

We realise that it can all feel rather overwhelming at the beginning, and you may worry about not being able to cope, finding out what to do etc.  So, PADS has published our Little Orange Book of Knowledge, aka You don’t know what you don’t know This is a wonderful book that you can dip in and out of as you want to find out any information, as and when you need to. 

Our closed groups are also full of information and support, so you will be really well supported and have access to information as you need it.

And if by chance you can’t find what you need to know, just ask!  We are here to help.

PADS is very much about supporting the whole family and we are delighted to offer information and support to our Grandparents too, both those expecting and those already enjoying the fun and joy of being grandparent to a child or young person with Down syndrome.
We offer Makaton courses exclusively for Grandparents so they can enjoy learning how to sign. 
We also have closed groups for Dads to be and to dads to children with Down syndrome.  We run monthly evening sessions for our dads to learn the signs for a book each month, so you can read and sign a bedtime book with your child.  

Some parents worry that having a baby with Down syndrome may have a negative impact on their other children, so do please take a read of some of our experiences in our wonderful book #NobodyToldMe the truth about Down syndrome, where there are stories written by siblings and indeed grandparents.  
A lot of research has been conducted in this area and in a study of
822 brothers and sisters, 96% advised they feel affection towards their sibling with Down syndrome, 94% expressed pride and 88% felt they are better people for having the sibling with Down syndrome in their life.  We don’t know how this compares to the general population, but not sure everyone feels as positively towards their family members!!!


We are always keen to connect parents with local families, and we have a wonderful network of support groups across the UK who you can access, as well as the ongoing online support PADS is able to give.
We see that many families connect through our closed groups and are always proud to see #PADSPals!

The majority of our parents advise that they have not needed to buy anything special and if they have equipment from older children/relatives they are able to use the same again. 

A few babies require a car seat that is more horizontal than upright, and recommend Cybex Cloud Z or Joie Baby i-Level Recline.  We’ve noticed that many rave over the Shnuggle bath, that was designed and created by parents of a child with Down syndrome.  Shnuggle are kind enough to offer our parents a discount of 15%, just quote SHNPADS15 when ordering! 
As baby grows, parents do find more supportive seats/high chairs helpful. Some local authorities provide high chairs and Tumble Form chairs to families, so worth asking in your area.  Otherwise parents recommend the basic Ikea high chair with an insert and many recommend the Giraffe chair from Fisher Price.
PADS has a group where PADS parents kindly pass on some of these items to others for cost of postage and a donation to PADS.  

It’s fair to say no one can predict the future for any child.  Yet we do all too often hear of medical practitioners telling expectant and new parents just what their baby with Down syndrome, will and won’t be able to do!  Our book #NobodyToldMe the truth about Down syndrome and PADS website give an insight in the reality of our lives.  Parenting any child brings rewards and challenges, and it’s fair to say that parenting a child with Down syndrome is the same.  We often say that we celebrate the milestones even more, as we know for our children they generally take longer to master a skill, and so we regularly see and hear from parents who burst with pride at what their child is doing.
If you enjoy celebrating your child’s milestones we have developed a wonderful set of celebration cards you may like! 

This is obviously very personal to each family.  In general we see that friends and family will follow your lead, and so if you share the news in a positive way, you should receive positive responses.  
Some expectant parents just tell friends and family they are in close contact with as and when, others choose to pop a post on social media.  There’s never a one size fits all way, so you do feels what’s comfortable for you and your family. 

From our experience it will be a complete mix of emotions with an overwhelming dollop of pride!  
In the States Dr Brian Skotko undertook research that showed of 2,044 parents, 99% advised that they love their child with Down syndrome, 97% expressed pride and 79% have a more positive outlook on life.

Whilst some parents struggle in the early days of discovering baby has/may have Down syndrome, we see that the absolute vast majority of parents go onto wonder what all the worry and fuss was about.  

We know that folk with Down syndrome have a learning disability, that it takes longer to learn and master skills and for some who have a dual diagnosis with autism, development is slower and needs are more complex.  But what we see time and time again, is that parents love their children and whilst they may well want to change the systems that can at times be challenging, would not want to be without their child or young person with Down syndrome.
As parents, we adapt, we meet our children’s needs, whatever they are!  If your daughter wakes in the middle of the night being sick, you get up and look after her – whether she has Down syndrome or not.  If your son has delayed speech, you find out how to help him – whether he has Down syndrome or not. 
There are some wonderful local groups across the UK who offer groups you can join and connect with other families. 
So many of us have made life long friends locally and via the power of social media across the UK, indeed internationally!
On PADS groups there is always someone who knows how you’re feeling, has the answer to any queries and will join in celebrating every achievement – however big or small.
Parents find they become far less judgemental, more considerate and patient, and enjoy and appreciate life in many different ways.
Parenting any child is a mix of ups and downs, and so it is with a child with Down syndrome.  It can be tough when your friends kids are all off and running, and your child isn’t yet walking; or when other children can recount the alphabet but your child’s speech is delayed.  That said, it can also be so, so rewarding when your child does walk, does run and communicates with you.  So many of our parents advise that the pride is far stronger than with other children, that you appreciate every step and become the strongest advocates, shouting from the roof tops just how amazing your child with Down syndrome is, how loved and valued they are by friends and family.  
There are frustrations and challenges too… we think most would agree, mainly due to bureaucracy and systems, not due to the child themselves.  Times are changing for the better and opportunities increasing for people with Down syndrome all the time.
Down Syndrome UK was very proud to be heavily involved in the Down Syndrome Act which was introduced in England in 2022.  We believe it will raise awareness and expectations, and improve services and knowledge around how best to support our children and young people. 
If you listen to people with Down syndorme, their friends and families, the future is exciting!  The journey ahead may be  taking a different route to the one you perhaps expected but we’re here to help you to navigate the journey, and to enjoy the views and the ride!! Dr

Increasingly more and more children in the UK attend their local mainstream school. 

Our children and young people should be able to access support throughout their education.  The framework varies across the UK, but there will be a legal document that sets out what your child needs help with and how the school must provide that support.  

At DSUK we hold regular information sharing session and training so you understand what is required. So this is probably a way off for you, but rest assured we are here to help you as and when needed.

The support needed will vary from child to child, and the support available does currently vary across the country. We hope that the implementation of the Down Syndrome Act 2022 will improve services and support to our families.

At PADS we are passionate about ensuring our families have access to the information and support that their child needs and deserves.  Where local services are lacking, some local support groups provide services.
For those who do not have good local services and support, PADS provides online physiotherapy advice and support from birth, via POPS!  PADS Online Physiotherapy Sessions.

And as baby reaches 6 months, our wonderful PEGS – PADS Early Development Groups guide you with everyday activities you can do at home to help little one’s development.

Our Little Orange Book of Knowledge is full of information to let you know what little one can access and when.

There’s no need to know everything now!  Just know that we are always here for you.  

We have many parents who are travelling the journey as a lone parent.  Some by choice, some not.  

As with any situation, friends and family count even more.  And what all our parents discover is the amazing community of PADS parents who are there to provide encouragement, support, a shoulder to cry on, a milestone to be celebrated……

One single mum shared, ‘The PADS 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. You kind of become a warrior, there is nothing you wouldn’t do for your child, even more so when you’re doing it alone and with the additional need. On a positive, I am super proud of how far we’ve come, all we’ve achieved, how well my daughter is doing and it’s all down to me (and her of course!) but I’ve done it all, it’s very satisfying, plus I get all the cwtchs/cuddles!

Having a child with Down syndrome gives you access to a club you may never have chosen to become a member of, but once you’re in soon discover is the best kept secret!

Folk with Down syndrome and their families are generally entitled to financial support.

In brief, Disability Living Allowance is available from 3 months of age.  It is awarded to children who require considerably more care than a child of the same age without any disability.  Some of our families receive DLA from 3 months, most from 12 months.  

You can potentially apply for Carer’s Allowance once DLA has been awarded, and if you receive Universal Credit this may increase too.

Contact provide some very useful information about the different financial benefits you/your child may be entitled to.

Baby will receive all the routine newborn tests and depending on findings, may require some extra support in NICU/SCBU or may not.  
If you are wanting to breastfeed we suggest you make your wishes clear and seek support, if required.  PADS has a Breastfeeding Supporter and closed group for Breastfeeding Parents you may wish to join.  
Within the first 6 weeks, baby must have a formal heart assessment, including an echocardiogram.
Some babies with Down syndrome seem more prone to jaundice and may require some time requiring phototherapy. Many parents refer to this as being under a sunlamp!  Some babies who require heart surgery, may be too tired to feed fully and need some support via an NG tube. Most babies with Down syndrome have hypotonia, low muscle tone, and this can impact on their feeding. If you wish to breastfeed you can express your milk and this be fed to baby via the tube and/or in tandem with a syringe, direct from the breast.  
As parent you have the right to decide how your baby is cared for and what treatment they access.  If you are ever not sure or unclear, ask for the information to be shared again and ask questions until you are happy and clearly understand.

Many babies leave to go home in the same timescale as babies without Down syndrome.

One issue we do sometimes see is that for those babies who have low muscle tone and may have/still require oxygen support, they need a car seat that keeps them more horizontal than upright.  Many parents recommend Cybex Cloud Z or Joie Baby i-Level Recline, in this instance as they provide a reclined position. 

You are already being a great friend by being here and reading our website!  Educating yourself about Down syndrome is great, but often friends just need to know that they’re not going to be the odd ones out, left out in any way.  Act naturally and continue to ask questions and take an interest as you would have done anyway.  Keep things in perspective – baby has an extra chromosome, they may have additional health needs, they may not.  They will have a learning disability but that doesn’t stop them from learning and it most definitely doesn’t stop them from being loved or from loving their parents and families.

You may find some of our guidelines helpful as they give a brief introduction about the condition, the importance of respectful language and bust some of the outdated myths!

Our Positive about Down syndrome website is full of stories that shows the everyday reality of our lives, as does our publication #NobodyToldMe the truth about Down syndrome.

Hearing the views of people with Down syndrome is interesting and important – take a look at self advocates section and our page about what it means to have Down syndrome.

If appropriate, acknowledge that your friend may be upset and/or worried when they discover baby has/may have Down syndrome.  There is a lot of ignorance and outdated information around the condition.

Do please signpost your friend to PADS closed group – either Great Expectations if pregnant or New Parents if baby has arrived.

Congratulate parents – a new life is to be celebrated and that is as true for a baby with Down syndrome as any.  Compliment new parents on how gorgeous baby is, if parents are happy for you to do so, cuddle baby and enjoy the new born snuggles and smells!  Let your friend know that they have an exciting future ahead of them, and that they’re not alone – they’ve got you and they’ve got us!  Together we can ensure your friend enjoys their pregnancy and new babies are celebrated and enjoyed.  

Join our Great Expectations Facebook Support Group

It can all be very overwhelming in the early days, so we are here to help you as and when you need information and signposting.  We are here to support you throughout your pregnancy and beyond, when baby arrives our care and support continues.

Find your local support group

We provide a huge amount of support and information online that is available 24/7; however, we really value and appreciate the importance of local support groups for children and young people with Down syndrome to make local friendship circles, as well as to access local specialist services.

We'd love to hear from you