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 546 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 that 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.

 

…more than medical

While there can be an abundance of medical information about Down syndrome, there is not a lot that 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.

 

Information, help and advice for new and expectant parents and families

Parents Ciara and Seamus they tell us about raising their children Fionán (5) and Seána (3) who has Down syndrome. The couple talks about the initial news, their thoughts and feelings then and now, and how the journey has been for them so far. Our thanks to Ciara and Seamus for taking part in the video and allowing us a glimpse into their family life.

In our New and Expectant Parents section, you will find our New Parent Booklet and our ‘…more than medical’ publication – which provides real insights into the realities of family life with a child with Down syndrome – advice on your next steps, how to find your local branch of Down Syndrome Ireland, details of our parent support service Parent Link, the answers to some frequently asked questions about Down syndrome, and more.

 

We are here to help and support you

Down Syndrome Ireland provides support and services for people with Down syndrome and their families throughout Ireland. If people with Down syndrome and their families require any information or support, please contact us on 01 563 2450 or email info@downsyndrome.ie.

We are a community of people here to support you – we have a national office and 25 branches around the country.

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

We provide ‘all-through-life’ support to people with Down syndrome and their families with specialists in the areas of health, speech and language, early development, education and adult education – find out more about our support team members.