Information

Down syndrome is a chromosomal accident, it occurs at the time of conception; it is not anyone's fault and does not have anything to do with anything done during pregnancy.

Each of the bodies cell has 23 pairs of chromosomes, the smallest pair is number 21 in Down syndrome, cells have three chromosome number 21, not the usual pair, this is called trisomy 21.

This affects the way some structures and organs grow, which gives rise to a number of features that can be identified in a person with trisomy 21, when a group of features occur commonly together in a condition, it is called a syndrome. Down syndrome is named after Dr Langdon Down who first identified and listed common features associated with trisomy 21. Along with some common physical features, trisomy 21 also causes a varying level of intellectual disability.

Down syndrome (DS) can occur with parents of any age, DS occurs randomly across all races and cultures and can not be cured.

However, a person with DS has loads of potential and no limit should be put on their ultimate achievements. It is important to remember each person is an individual.

How do I know I am going to be able to care for and make the right choices for my baby / child?

You may feel unsure about your ability to cope:

It is important to remember that the baby / child who has down syndrome is primarily just that-a child, and will need all the same love and nurturing that any child needs from their parents and family. When we choose to be parents we know we will have challenges along the way, but trust ourselves to “learn as we go”. Having a child with Down syndrome will bring challenges and some may be different than those we expected to have as parents, but many are the same. Trust yourself to meet the challenge.

Remember you are not alone, you will get professional help from the hospital child development team (or a private early intervention service if you choose).

You can also attend a parent support group. By becoming a member of the WDSA you will find there is support when you need it from other parents who are extremely willing to help and will share their experiences with both openness and honesty.

We provide opportunities for parents, family, and individuals to come together, to enjoy each others company, to share stories and questions, and to learn from each others experiences.

Through our newsletters, coffee mornings and other organized events you can keep yourself informed and have plenty of chances to ‘network’ and access resources.

Where can I get information that will help to answer many of the Questions I have about Down syndrome

A good place to start is with the information pack put together by the New Zealand Down syndrome Association (NZDSA). This pack, called “We Welcome your Baby”, has been written especially with new families in mind and is written in every day language, the pack also includes a video.

We can provide new parents with a copy of this excellent resource, the pack contains a video in which four families talk openly and honestly about Down syndrome and their experiences, two pamphlets ‘We welcome your baby’ and ‘ I don’t know what to say’ and three booklets –

'You & your Baby’ covers topics like:-

٭ Finding out, & Telling others ٭ First questions

٭ Your feelings, & looking after yourself ٭ Feeding your baby

٭ Your babies development, Early Intervention, & Growing Up

٭ Related resources

‘Your Babies Health which includes a health journal for your baby, Growth charts specific to children with DS and covers topics like:-

٭ Your babies chromosomes ٭ Possible Newborn health problems

٭ Heart Defects ٭ Gastro-Intestinal Tract Disorders

٭ Congenital Cataracts ٭ Unusual blood results

٭ Related resources


'Our Stories' this is a collection of stories written by parents about their experiences.

The NZDSA website is also a good source of information. See Links

The WDSA has also put together an information & resource booklet for new local parent members. We can also recommend other relevant books and resources to you. Please contact us.

How do I find out more about becoming a member of WDSA

1. You can phone our regional contact on 0800 693 724 (Follow instructions to have your call transfered to a Wellington regional contact)

2. Our region covers Wellington, the Hutt Valley, the Wairarapa, and the Kapiti Coast to Otaki

3. You can mail your details to us. Please provide the following information

i. Parents name (and your name if not the parent)

ii. Address, phone number and e-mail (if applicable)

iii. Child's full name and date of birth

4. You can e-mail us at contact@wdsa.co.nz

MEMBERSHIP IS FREE

WDSA membership is available to parents of children with Down Syndrome, grandparents, aunts and uncles, adult siblings, care-givers and other interested organisations.

You can contact us at:

Wellington Down Syndrome Association

PO Box 40 993

Upper Hutt

Wellington

Phone: 0800 693 724 (select 1)

E-mail contact@wdsa.co.nz