New and expectant parents

Having a baby with Down syndrome?

You are probably experiencing a wide range of emotions.  The feelings of joy at having a new baby may be mixed with uncertainty, shock, disappointment, anger, and sometimes fear for the future. There is so much information to take in.

This may be a stressful time for you and your family; not knowing what to expect for your child and what to expect from yourself.  You are not alone – we are here to support you.

Down Syndrome Ireland has a national office and 25 branches offering support and services, information and a listening ear for parents and families across Ireland.

When you are ready, connecting with Down Syndrome Ireland and your local branch can be a great start to helping you welcome your baby. You can contact any of our branches or call us at our National Office on  01 563 2450. 

In the meantime, you may find our New Parent Booklet, and our  ‘…more than medical’ booklet useful.

We know there is a lot of information to absorb right now but it’s important to remember that Down syndrome is just a small part of who your baby will be. Just like the rest of us, people with Down syndrome enjoy long and healthy lives that are happy, fulfilling and active.

Congratulations on the arrival of your new baby!

Having a new baby is an exciting and happy time for the whole family, but it can also be overwhelming and a little bit frightening to find out you have a child with Down syndrome.

We understand that you may feel your life is no longer following the road you expected but we want to assure you that you are not alone.  There is a community of people ready to welcome you, to listen and to share their experiences with you.

Down Syndrome Ireland has a national office and 25 branches. We are a community of people here to support you through all the ups and downs of having a baby with Down syndrome.

When you are ready, connecting with Down Syndrome Ireland and your local branch can be a great start to helping you welcome your baby. You can contact any of our branches or call us at our National Office on  01 563 2450. 

In the meantime, you may find our New Parent Booklet, and our  ‘…more than medical’ booklet useful.

We know there is a lot of information to absorb right now but it’s important to remember that Down syndrome is just a small part of who your baby is. Just like the rest of us, people with Down syndrome enjoy long and healthy lives that are happy, fulfilling and active.

Useful Resources

• The Informing Families website is a great resource for new and expectant parents who have received a diagnosis of Down syndrome. Down Syndrome Ireland consulted in the development of the resources for this site.

When you are ready, you might like to speak to another parent who has a child with Down syndrome, someone who has been where you are and is familiar with the feelings and reactions that you may be experiencing.

Our Parent Link programme is a support service for new parents, which is run through our branches. Our amazing volunteer Parent Link parents receive training from Down Syndrome Ireland.  They will provide you with time, understanding, confidentiality and a listening ear.

To connect with a Parent Link parent in your area please phone Annette O’Neill at 01 4266500 or email us at info@downsyndrome.ie or access our service finder here.

Sharing the news with family and friends may be difficult.  You will know when and how it is best to tell other people.  Sometimes you need to tell close friends or family for support and comfort.  People will follow your lead. If you’re open, honest and positive about Down syndrome, they will be too. Sometimes people may say insensitive and hurtful things. Try to ignore these comments as they often come from a lack of knowledge about the syndrome.  Try to remember that it’s an individual’s lack of understanding that leads him or her to say the wrong thing.

How will it affect the rest of the family?

Parents generally worry about the effect having a baby with Down syndrome will have on family, particularly the siblings of your new baby. The effect may be far more positive than you expect. It is important to talk openly about Down syndrome in everyday life, and to encourage questions; rather than setting aside a day in the future to “break the news”. When you take everyday opportunities to answer questions, everyone’s worries are alleviated. As one big brother said, “Knowing what is happening is much better than imagining what might be happening.”

Most of us look forward to the birth of our baby.  We have dreams and plans for the future.  We may not articulate these to anybody, not even our partner. When the diagnosis of Down syndrome is made it may end all these dreams in an instant.

This diagnosis may affect us in many ways: physically, emotionally, and psychologically.  It can be a very difficult time, when feelings are very confused.  You may not feel like celebrating.

Negative feelings are not a sign of you rejecting your baby. Negative feelings you may be experiencing are about Down syndrome not about your new baby. These feelings are a normal, healthy reaction to the news you have just received.

What parents have said:

“I thought they must have mixed my baby up with someone else’s.”

“I was too young for a baby with Down syndrome.”

“I just took her home and treated her in the same way as all my other children.”

What is Down syndrome?

Down syndrome occurs when there is one extra copy of chromosome 21 in every cell in the body.
Down syndrome is a lifelong condition, which increases the risk of certain health issues. It may also affect physical development and learning abilities, though each person with Down syndrome is different.

Down syndrome affects approximately one baby out of every 444 births here in Ireland. It is currently estimated that there are about 7,000 people in Ireland with Down syndrome.

What is a syndrome?

A syndrome is a collection of several symptoms and signs that usually occur together.

Are there different types of Down syndrome?

There are three types of Down syndrome:

• Trisomy 21 (95%): extra number 21 chromosomes in every cell
• Translocation (3-5%): an extra chromosome 21 is attached to another chromosome in every cell
• Mosaic (1-2 %): mixture of cells, some with an extra chromosome 21 and some normal.

Each baby is an individual and this is no different for the baby who has Down syndrome. Your baby will have his/her own personality and many family features and characteristics. He/she will be more like his/her family than like any other person with Down syndrome. People with Down syndrome, whatever their age, are people first, with abilities, strengths and weaknesses like everyone else.

They may have additional needs, but this doesn’t prevent people with Down syndrome all over the world leading full and independent lives. The quality of health care, education and community support provided to children and adults with Down syndrome makes a real difference to their quality of life.

How do we know which form of Down syndrome our child has?

When a child with Down syndrome is born, or if Down syndrome is suspected, a chromosomal analysis is carried out (by blood tests) to confirm the diagnosis and determine the type of Down syndrome the child has.

Did I do anything to cause Down syndrome?

Down syndrome is never anyone’s fault. It just happens.

Is Down syndrome hereditary?

A very small percentage of all translocation trisomies are inherited. About 1/100 cases of Down syndrome may be inherited. Parents whose child has this type of chromosomal abnormality should seek genetic counselling.

Can Down syndrome be cured?

Down syndrome is a lifelong condition and cannot be cured.

Do all babies with Down syndrome have medical problems?

Down syndrome is a chromosomal anomaly which affects the whole body. This means that there are some medical issues that are more common in babies who have Down syndrome than in other babies. 

Talk to your GP or paediatrician if you have any concerns about your baby’s health or development as they will be the best person to reassure you or check for any health issues. 

You can also phone our clinical nurse specialist or look in our health section for more information.

Many people who have Down syndrome lead active and healthy lives and most conditions associated with the syndrome can be treated or managed.

What will my child be able to achieve?

Like any other child, children with Down syndrome vary in their abilities and achievements. Nobody can tell you what your child can and will achieve.  All we know is that there are thousands of people in Ireland with Down syndrome who have accomplished and continue to accomplish, many great things.

We know that it’s been a hectic few days or weeks and you have probably met many different medical professionals. This, along with the demands of a new-born baby, can be exhausting. We know that it can be difficult for you to keep track of all the appointments and the checks your baby may have had, but things will begin to settle down as time passes.

In our Health section, our Nurse Manager Fiona McGrane outlines the health implications that Down syndrome may have in babies and how best to work with medical professionals to manage them.

As many parents of children with Down syndrome know, there is an abundance of medical information about the condition but not a lot which provides real insight into the realities of having a child with Down syndrome. Our booklet ‘…more than medical’ is a resource to help support families and new parents with a pre or postnatal diagnosis of Down syndrome for their baby.  

Remember that we are always here should you need any advice or support.

While there can be an abundance of medical information about Down syndrome, there is not a lot which provides real insight into the realities of having a child with Down syndrome.

Our booklet ‘…more than medical’ is a resource to help support families and new parents with a pre or postnatal diagnosis of Down syndrome for their baby.  

Remember we are here should you need any advice or support.

Lots of communication happens before your child learns to talk so it’s never too early to start communicating. Nicola Hart, our Speech and Language Advisor outlines the ways in which you can help your baby along in the Speech and Language section.