New Parents

Congratulations!

Congratulations on the birth of your new baby! This is an exciting time for your family. While your baby has Down syndrome, you will experience the same joy and fulfillment as you would with a typically developing child. Take the time to enjoy this new little person in your arms who will show you the same love and trust as any other child.

Today’s generation of children with Down syndrome are far exceeding the expectations of the past thanks to therapies and services such as those provided by the Down Syndrome Centre. But early intervention is crucial. The sooner a child with Down syndrome receives physical and cognitive therapy, the greater their chances of reaching their full potential, living a fulfilled, socially included life as a child and into adulthood.

Today, young adults with Down syndrome go to college, have careers, form relationships and live independently.

If you want to know more, then contact us and arrange a visit to one of our centres and meet our specialist clinical team who can advise you. You can also become part of our family community which gives you unique insight and confidence in approaches to raising your baby.

In the meantime, read on for more of the information you need at this stage. And of course, you can contact at any time.

From a Mum's perspective

Joshua was diagnosed at birth with Down syndrome. Having first gotten over the tiny disappointment that my small, neat pregnancy bump didn't mean a world of pink dresses and ballet shoes, I felt real disappointment that my little bump meant a tiny baby boy with special needs. Sounds silly now but two disappointments in one go left me feeling cheated of the euphoric afterglow of giving birth. Instead of the incredible high, I felt like I was crashing downwards very quickly.

Doctors and nurses left us alone in the labour room to take in the news. When I think back to those few hours and days and the difficult phone calls that followed, I would have loved so much to have met another mother that could honestly look me in the eye and say, "life has not ended, your other kids life will not be burdened with this, this is not the worst news you could hear". I so badly wanted to see another family and see how they coped before I could believe it myself.

Many websites are either full of depressing, outdated information or over-the-top gushing love stories. I didn't want either. I just wanted to see real life, real families, real smiles.

Now all these years later, I can honestly say, from the bottom of my heart, that my smile is from ear to ear. My family is not broken, my family is full-on, hard work, crazy busy but life is definitely great. Joshua is the very heart of our family. We simply would not be the same without him.

So hang in there folks, take a deep breath and just believe. Believe you will be in my shoes, knowing what I know, in no time at all. Best of luck on your own unique and beautiful journey. I am here and willing to talk to anyone who may just need a little reassurance or try to answer any queries you may have, I can’t promise to have all the answers but sometimes just a friendly chat with someone sharing the same experiences can be worth its weight in gold.

- Triona Cussen, Manager, Down Syndrome Centre, Swords

Getting the news

Many parents find out their baby has Down syndrome soon after giving birth, but some parents already know they are going to have a baby with Down syndrome.

Each parent will experience different feelings. Many parents say it helps to focus on the here and now. As the days and weeks pass, and you get to know your baby, you will see them as a unique member of your family.

There is a lot of information on the internet about Down syndrome. Some parents say that reading from reliable sources lessened their worries and helped to guide them.

Other parents prefer to leave reading about Down’s syndrome until their baby is a little older and life has settled into more of a routine. Either way, we are here to listen.

What is Down syndrome?

Down’s syndrome is a genetic condition caused by the presence of an extra chromosome in the baby’s cells.

Chromosomes are tiny particles which are present in every cell in every tissue of our bodies. Most people have two copies of all chromosomes but people who have Down’s syndrome have three copies of chromosome 21. That's why Down’s syndrome is sometimes referred to as Trisomy 21.

People who have Down’s syndrome are born in every country in the world to parents of all ages and socio-economic backgrounds.

Anyone can have a child who has Down’s syndrome. Nothing done before or during pregnancy causes the condition.

In Ireland, approximately 150 children are born each year with Down’s syndrome.

What will my baby be like?

First and foremost, your baby has the same needs as any other new born. They will eat, sleep and cry and will need love and cuddles.

The most important thing you need to know about Down’s syndrome, is that everyone with the condition is unique.

People with Down syndrome inherit family characteristics and traits, and learn from the day-to-day interactions and activities they experience.

Children who have Down’s syndrome generally need more time to reach developmental milestones but the condition affects development, learning and health in many different ways.

Should I be doing anything different with my baby?

In the early weeks and months enjoy and get to know your baby. Have fun talking to them, showing them the world, and responding to the many ways that they communicate with you.

Generally speaking, caring for a baby who has Down’s syndrome is the same as caring for any newborn. As with all babies, enjoy them while they are little because they will grow up fast!

But you can look forward to enjoying your toddler, child, teenager and adult without always worrying about what you should be doing or what the future may bring.

Health

Babies and young children who have Down’s syndrome have the same health needs as all children. They may have health issues that can affect any child. You should take your baby for routine health checks and immunisations in the usual way.

Some health issues occur more often in children who have Down’s syndrome which is why some extra health checks are recommended. Just over half of children who have Down’s syndrome are born with a heart condition and ten percent are born with a bowel condition. Sometimes a baby will need an operation for these health conditions either soon after they are born or when they are older and stronger.

Feeding and breastfeeding

Almost all mothers who want to can breastfeed or provide breast milk for their baby. For some mothers breastfeeding is established easily, but others may find it takes a little more time, patience, and perseverance. Support should be available to help you if you want to breastfeed your child. Many hospitals employ a lactation consultant or have midwives with a particular interest in feeding.

For some babies, feeding gets easier as they grow older, and they will be able to be fully breastfed. Some mothers choose not to breastfeed or find that because of their circumstances, breastfeeding is not right for them.

Some babies have health conditions which affect feeding. Babies with gastro-intestinal tract (GI tract) conditions 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. At such times, mothers 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, babies can often eventually fully breastfeed.

Our speech and language therapist will advise you on how to support the development of your baby’s feeding skills, such as weaning, introducing new textures and tastes, chewing, drinking from a cup, and drinking from a straw.

What about family life?

The most important experiences for a child who has Down syndrome come from being in a happy, loving, active family .

When you have a baby, it is important to try and find a balance that works for you and your family.

In the early months and years, it is likely you will have some regular appointments with health professionals to discuss your child’s health and development.

It’s worth bearing in mind that, to some extent, all young children must learn to fit in with what is going on around them and you will need to balance early learning activities with family life in a way that suits your family.

Brothers and sisters

It’s a good idea to talk to your other children about their new sibling. As a parent, you are best placed to decide when to do this and how much information is appropriate to give your other children.

Much will depend on their age, their level of understanding and their curiosity.

They may not understand or remember all the information, so follow their lead, keep listening and answer their questions.

Your children will follow your example. If you see Down syndrome as just one aspect of your baby’s life, your children will too.

I wish I had known….

Here's what some parents of children with Down syndrome say they wish they had known when their baby was born:

‘I wish I’d known then that my baby would still be beautiful and would develop and do the things all babies do, albeit at a slower pace, and that he would teach me a lot of things.’

‘A parent support group that I joined when my daughter was a year old was invaluable. I wish I had joined sooner but I was a bit in denial. I thought that I would just treat her the same as my other children and that would be fine but you do need help and the sooner the better really. Plus, I met lots of other people in similar circumstances and we were all able to help each other.’

‘I can only describe how much joy my son has given me, although the first year was a challenge and there were some low points. My son is a happy, funny little boy who always makes people smile. Looking back, I shouldn’t have worried that I could not cope or think I would not be a good parent to a child who has Down’s syndrome. I shouldn’t have worried so much!’

‘Wish I had known how proud I would be of her achievements.’

‘Wish I had known she would attend mainstream primary school and make a difference to children’s attitudes to disability.’

‘I wish I’d known that my daughter would be, in many ways, a ‘typical’ funny, sassy, caring, grumpy, argumentative, wonderful teenager!’

‘I wish I’d made contact with the Down Syndrome Centre sooner as that would’ve been a great comfort.’

Next stage

Once you have had time to enjoy your new addition and are ready to look for support or meet other mums or dads to share experiences, we are here to help.

Our two Dublin centres offer clinical, educational and wellbeing services for children with Down syndrome from birth to 18 years and their families.

While our professional therapists, educationalists and facilities are at the heart of our service, our families attach great importance to our function as a community hub for networking and peer support. Our bright, colourful centres are filled with positive energy and optimism, making them a welcoming home from home for everyone.

Find out more about our centres in Sandyford and Swords by viewing some of our services below or contact us using the button below.

Our Services

Physiotherapy

Early paediatric physiotherapy for children with Down syndrome can help with the acquisition of motor skills and develop strength to help maximise motor function. Some common challenges that can affect the physical development of a child with Down syndrome include low muscle tone or ‘Hypotonia’, reduced strength due to low muscle tone, and hyper-flexibility - an excessive ability to extend the joints (double jointed).

These factors can affect a child’s physical development such as rolling, sitting, crawling, and walking. > More info

Baby Massage

The very special art of using nurturing touch through a specifically designed series of strokes. These strokes combine Indian and Swedish massage, reflexology, and some gentle yoga stretches. These strokes are demonstrated on a doll, while parents massage their babies during the class. All classes are carried out by a fully qualified baby massage instructor for babies from 6 weeks to pre-crawling age. > More info

Support

Support Mum Triona is a mum of four boys, her last boy was born with Down syndrome. Above you will have read her journey with Joshua. Triona is on the end of the phone to try and answer questions you may have, she does not promise to have all the answers but sometimes it’s just simple reassurance and a sympathetic ear that’s needed.

Team 21 Tots

Team 21 Tots is a mums and tots group run by a qualified Montessori teacher who has a child with Down syndrome. The class caters for 6mths – 2yr olds and introduces “Lamh”, sign language to encourage communication and interaction from a very early age. An ideal opportunity for the very new parents to come together and share experiences – Available in our Swords Centre

SKIP

SKIP is an early intervention programme that targets all areas of the child’s development, such as speech and language, fine motor skills, gross motor skills and most of all social skills.

The aim of the programme is to give children the opportunity to congregate, to learn from one another and experience specific developmental intervention geared towards their specific needs. The primary goal being to prepare a child with Down syndrome to go to mainstream school at the end of the programme. > More info

Speech and Language Therapy

Our Speech and Language Therapist works with children who have articulation delays and disorders. The therapist will evaluate each child to determine strengths and weakness, address family concerns and develop an individualised treatment plan appropriate to areas and level of difficulty. Classes given on a one-to-one basis and also in groups which help develop social skills. > More info

Occupational Therapy

Occupational Therapy Every child is unique, and we understand the challenges that children with Down syndrome may face in their daily lives. We're here to help your child thrive by addressing their fine and gross motor skills as well as sensory processing difficulties. Our Occupational Therapy services are designed to support your child in developing essential life skills. From dressing, feeding, and toileting at home to improving handwriting and typing skills for school, we cover it all. We also focus on promoting social interactions and meaningful play with peers, ensuring your child can fully engage in enjoyable leisure activities. > More info

Talks & Seminars

We hold regular seminars run by professionals from a variety of sectors covering topics all relevant to the Down syndrome community: Education, Financial and Nutrition. New parents’ evenings etc. An opportunity to gain information and meet other parents in a friendly surrounding.

We have Toilet Training series, Bicycle Clubs, Youth Clubs, Sibling Workshops and Summer Camps. > More info.

And there’s so much more...

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