HeartKids WA

Privacy Policy PDF

Fundraising

Information

Heart Conditions – detailed information for parents

HeartKids is pleased to offer this new online resource for people wishing to know more about the various heart conditions. The site includes details on tests, procedures and operations along with details on health and nutrition, exercise, schooling, adult congenital heart issues. Click link to view: Heart Conditions – Detailed information

Children with Heart Conditions

A great new online resource for parents of children with heart conditions

Children with Heart Conditions – online booklet

The forms below may assist you when your child starts childcare/preschool/school.
Parent__School_Information_Booklet
First_Aid_Action_Plan.pdf
MedHistoryForm.pdf
TeachersandCarers.pdf

Thank you for getting in contact with us

Enquiry Pack

Would you like to receive a ‘Free’ Enquiry Pack and find out more more about HeartKids?

Disclaimer

We are unable to give medical advice; this is the role of your doctor. Since every case of congenital heart disease is different, any medical information displayed on our website should be used ONLY in conjunction with advice from your doctor. Such information cannot and should not be used to replace professional advice from your doctor.

Please remember that the opinions expressed in any article herein represent personal experience only. MEDICAL DETAILS ARE SPECIFIC TO EACH INDIVIDUAL CASE AND MAY NOT BE APPLICABLE TO ANOTHER CHILD. Parents who require more specific information should check with their child’s own Cardiologist.

Also, please note, that the opinions expressed in the articles herein, are those of the author and do not necessarily represent the beliefs or opinions of the committee of Heartkids Nsw Inc.

Further Disclaimer:

Graphics found on this site were not created by the webmaster. They were obtained from various sources on the internet that labeled them as “freely distributable”. If you should discover images in this collection which you recognize as copyrighted, please email the immediately so that they may be removed.

Useful and Interesting Links

Williams Syndrome

Patient Associations

National Organisations

Noonan Syndrome Support Group [US]

Sad Links

Sadly, sometimes heart children die.

Sometimes families and friend no matter how much they might wish to, can’t be the one you need to turn to. You may not have lost your child but maybe a friend has and you want to help but can’t quite find the place to start. The following are links to sites in both Australia and overseas that have been started to help families, both parents and siblings who have lost a child.

We wish that we did not have to add these links but are very grateful that we are able.

www.sidswa.org.au

Sids and Kids WA is an organisation that offers grief/bereavement counselling to families who have experienced the sudden and unexpected death of a child up to six years of age; there are groups also in the Hunter and other states of Australia. Their Phone number is 08 9474 3544

M.I.S.S. Foundation in the USA was started by Joanne Cacciatore after the death of her daughter. There are lost of different areas on this site and it is the place of the well known kindness project. While checking this site over I found it a little sad, informative, complex and surprising to me, very uplifting. I have ‘spoken’ with Joanne via email and found her to be a very lovely woman who was pleased to be asked to be a link on our site.

The Compassionate Friends was founded in Coventry, England, in 1969, by Rev. Simon Stephens, Assistant to the Chaplain in the Coventry and Warwickshire Hospital. Simon noticed that the intensity and duration of parental grief was much greater than that of others who lost loved ones. He brought together two couples whose children had died at the same time, hoping they might comfort one another. It worked; each parent understood the pain the others were going through, and they were able to support and help one another as no one else could do. In time, the two couples reached out to other grieving parents, and The Compassionate Friends was founded. Compassionate Friends has Australian Offices. For NSW: 4th Floor 32 York Street, Sydney (02) 9290 2355

Further telephone contacts are:

Kids Help Line: 1800 55 1800
Lifeline: 131 114

Bereavement C.A.R.E. Centre: (02) 9869 3330

Our Contact Details

Western Australia

HeartKids W.A. Inc.
P.O. Box 1554
West Perth W.A. 6872
Email:
Phone: 9340 7996
Fax: 9340 7997

Support Co-ordinator: Cecilia Donovan 0417 417 203

Heartkids Geographe

Suzi Kent
Mobile: 0447 548 024

HeartKids Australia

CEO, Neil McWhannell
Office: 02 9487 8256
Fax: 02 9489 56 93
Mobile: 0424 161 923
Email:
Web: heartkids.org.au
Post: PO Box 204 Wahroonga NSW 2076

HeartKids State Organisations

HeartKids Queensland Inc

HeartKids Queensland Inc
Phone: 07 3341 8145
Fax: 07 3341 5460
Post: P.O. Box 118 UNDERWOOD QLD 4119
Email:
Web: heartkidsqld.org.au

HeartKids NSW Inc

Phone: 02 9294 0800
Fax: 02 44235812
Post: C/-Adolph Basser Cardiac Institute
Children’s Hospital Westmead
Locked Bag 4001
Westmead NSW 2145
Email:

South Australia

HeartKids of South Australia Inc.
PO Box 364
North Adelaide SA 5006

HKSA Secretary (me)
Email:
Mobile: 0407 070 656

Northern Territory

HeartKids N.T.
P.O. Box 848
Palmerston N.T. 0830

HeartKids Victoria including Tasmania

HeartKids Vic Inc (including Tas)
PO Box 803
Parkville VIC 3052

Merchandise

HeartKids WA Inc offers a limited range of merchandise for sale to members and to the general public.

Corporate Christmas cards

Corporate Christmas cards are now on sale. 40 cents from each card goes to HeartKids.
To order simply go to: www.christmascards4charity.com.au/heartkids

All proceeds are used to support the group’s activities and in turn the HeartKids themselves and their parents and families.

Our Supporters

We would also like to acknowledge:

Heartkids WA Sponsors

Major Sponsor

Corporate Sponsors

National Partners

How to become a Sponsor

This Page is currently being updated please contact office on 08 9340 7996 if you require information.

How to Make a Donation

You can help HeartKids make a difference in the lives of children with heart disease by generously donating. This will continue our vital services of supporting these children and their families as well as raising funds for research and items of need in the Cardiology areas of Children’s Hospitals around Australia.

To make a cash or credit card donation please use either our donation slip… Mail: PO Box 1554, West Perth WA 6872 Fax :(08) 9340 7997
WA_DONATION_SLIP.pdf

… or complete the form below

First Name: *		Surname: *

Email: *

Postal Address: *

Postcode: *

Purpose: National Initiatives State Initiatives

Specific Purpose:

Amount: ($AUD) *

You will be redirected to an eway secured website where you can complete the transaction with your credit card.

Volunteering

HeartKids WA offers a wealth of opportunities for volunteers to become involved. From supervising Teen Camp to supporting one of our functions to secretarial and office work to help our small team out, all of it is appreciated – whether your involvement is heavy or light, long term or short, we encourage volunteers to contact HeartKids WA (08) 9340 7996 and learn more about us. At the very least, your interest will we hope generate awareness which is sorely needed.

Membership

HeartKids membership is open to:

Families with a child who has a congenital heart defect or acquired childhood heart disease. This includes parents, siblings, grandparents etc.
Teenagers and Adults with CHD who would like to join a forum for discussion.
To any individual or group concerned with the issues of congenital heart defects who have a specific interest in helping raising awareness and funding.

To any individual involved in the issues of congenital heart defects and acquired childhood heart disease, be they from a medical background or the political arena.

Membership Costs

Membership costs $25.00 annually.

Committee Meetings are held on the 3rd Wednesday of each month at 7.00 pm in the 8th Floor Board Room of the PMH Administration Building

Members are welcome to submit items for discussion or attend these meetings as observers. Please advise the Executive Manager of you intention to attend.

Membership offers you:

A seasonal Newsletter to keep you informed and updated;
Family Support Coordinators – present in hospital to offer you support at critical times, and by phone and email as required;
Regular coffee mornings so that you can meet and share experiences with other families, these can be held either in hospital or in your local area, encouraging a local network of support for you and your family;
Opportunities for your heart child to attend events with other heart children;

Opportunities to attend special afternoon or evening information events by invited medical practitioners and other professionals as they arise.

Facts about Childhood Heart Disease

Incidence of Childhood Heart Disease is far greater than most people expect. Although it comes as quite a shock to family and friends alike, an astounding 6 babies each day in Australia are diagnosed with heart disease! Cures remain predominantly unknown and little in general is known about the disease and its causes. Therefore we need your help to assist in addressing this situation

Common known facts about CHD include;

Heart defects are present in 1 in 100 babies
Heart defects are the most common birth abnormality
Heart disease in children is the leading cause of young children death in Australia, accounting for more than 30% of all childhood deaths.
Childhood Heart Disease takes more lives than all other childhood diseases combined
Nearly twice as many children die each year from congenital heart disease compared with all childhood cancers
More than 2015 babies are born in Australia each year with a heart defect
Childhood heart disease is no fault of the parents or the child. It is simply a result of the cruel hand of fate
The severity of defects in heart children can range from a hole in the heart, to a highly complex combination of conditions
Up to 20% of heart defects are gene-linked abnormalities, but for the remaining 80% the cause is largely unknown
More than half of these conditions are serious enough to require treatment through medication or surgery – sadly some cannot be repaired
Cures of these heart conditions remains unidentified, therefore there is an immense need to develop early intervention strategies to identify and prevent heart disease in children
Heart disease is the most common reason for admission of Australian children to intensive care units with more than 1300 being admitted each year
The term ‘congenital heart defect’ refers to an abnormality of the heart, which is present at birth. It has nothing to do with diet or obesity
Heart valve replacements come in 3 forms: homographs (valves from humans) tissue valves (from cows or pigs) and mechanical man-made valves
Some children acquire heart conditions during childhood, eg cardiomyopathy, Kawasaki disease or as a result of rheumatic fever
A disproportionate number of indigenous children suffer from acquired heart disease – often as a result of rheumatic fever, which is rampant in many communities
Heart Transplants are much more challenging for children as their immune systems are not fully developed

The only Paediatric transplant unit in Australia is at the Royal Children’s Hospital, Melbourne

More than 4 young Australians will die this week as a result of congenital heart disease. Will you help to save them?

Sources:
Australian Institute of Health and Welfare
Australian Bureau of Statistics
American Heart Association

Our partners

coming

Annual Reports

HeartKids WA Management Committee - 2009

HeartKids WA Inc is run by a board elected annually by members at our Annual General Meeting. These roles are purely voluntary and non paying. They are made up of parents of HeartKids and individual professionals concerned with the high incidence of congenital heart defects who donate their time and experience to support HeartKids WA in its goals.

Our 2009 Committee is as shown:

President: Ray Tinetti
Vice-President: Dianne Lunt
State Manager: Karen Mason
Treasurer: Matt Tognini
General Member: Shelley Bignell
General Member: Jane Meehan
General Member: Paul Barratt

PMH Community Advisory Counsel Rep: Samantha Revell

Committee Meetings are held on the 4th Monday of each month at 6.00 pm in the 8th Floor Board Room of the PMH Administration Building

Members are welcome to submit items for discussion or attend these meetings. Please contact the office if you are coming so we know to look out for you.

Regional Centres

Port Hedland: Liz Starling
Gerladton:
Mandurah: Kerry Irvine
Geographe: Suzi Kent
Albany: Ros Thies
Bunbury: Kellie Depiazzi

Kalgoorlie:

Life Members

Lin Quinliven 1989
Edna Boyes 1989
Tanya Tinetti 1993
Adele Schober 2004
Dianne Lunt 2004
John Bignell 2009

HeartKids – A History

HeartKids began in Western Australia in 1979. ‘HeartKids’ was born of the passion of a few families who had experienced the kaleidoscope of emotions associated with having a child with congenital heart disease.

In the ensuing years HeartKids offices were established in the various states in Australia, with management and a team of Family Support Coordinators able to support families, all backed by a board and a group of committed volunteers.

In 2004 sixteen delegates at the annual conference unanimously supported the proposal that an alliance of state associations be created to form an Australian HeartKids group, and that its name be ‘HeartKids Australia’ (HKA).

An Interim Board was established to support and guide the working party, and oversee Heartkids Australia’s progress.

The journey into 2006 saw HeartKids Australia adopt a constitution, become incorporated, develop its corporate identity, raise funds for research and form alliances with a range of related organisations, sponsors and supporters.

Recent Developments

In June 2007 the appointment of the new full-time Chief Executive Officer was confirmed and the National Office of HeartKids Australia began operating.

At the July 2007 National Conference we confirmed our Vision, Mission and Core Focus areas.

HeartKids is currently experiencing a very exciting phase in its history as it moves to become the ‘public face’ of chidlhood heart disease. If you would like to suport us or be part of this process, please contact HeartKids Western Australia on 08 9340 7996

Our Vision and Mission

Our Vision

Life unaffected by Childhood Heart Disease

Our Mission

As the public face of Childhood Heart Disease (“CHD”) and through our active partnering with the medical community and Government, Australia will adopt best practice in the intervention, treatment and support for all those affected.

This will result in a reduction of incidence, decreased mortality, significantly improved quality of life and best outcomes for those affected by CHD.

This will be achieved through our work in support, awareness advocacy and research.

Who we are

HeartKids is a support group for families of children with heart disease, be it congenital (born with) or acquired. We started as voluntary group of parents and individuals dealing with and concerned about the day to day realities of raising and caring for children with cardiac conditions, and sometimes dealing with the loss of a child due to their congenital heart defect. We have grown to an organisation of some strength, with 3 part time employees in WA and a presence in almost every state of Australia, as well as a National body – HeartKids Australia.

Our members wish to offer their support to other families who are in crisis, providing opportunities to share common anxieties and challenges. We arrange, where possible, to meet with other families affected by the impact of life with a child with a cardiac condition and to create a ‘network of support’ for all families.

Over the years, HeartKids WA, with the help of members, sponsors and friends, has been able to help out the Princess Margaret Hospital by way of donations of money, equipment and research grants.

HeartKids has several regional representatives who offer their time to arrange coffee mornings and special activities in order to support families with a child with CHD. Telephone support is also offered. Our aim in this area is to ensure that parents aren’t struggling alone.

HeartKids’ produce a seasonal newsletter “Heart to Heart” which updates and informs our members on patient progress; special ‘heart family’ activities; government policy information of relevant, upcoming events and much much more. HeartKids News keeps our geographically diverse membership aware and ‘close’.

HeartKids can assist with information about your hospital stay, for example information on available accommodation, meals, and transport and parking and in some cases can assist families financially in these areas. We can also assist with information on the availability of certain hospital services such as social workers, occupational therapists, and speech pathologists.

Most valuable to our families during the crucial time of surgery are our Family Support coordinators. At Princess Margaret Hospital we have our Family Support Coordinator – Cecilia Donovan, assisted by Janelle Sugden. Both coordinators are ‘heart mums’ and understand more than most what families are experiencing during the often tension filled hospital stays.

As well as offering support to families, HeartKids aims to increase awareness in the general community and corporate sector about the high incidence of congenital heart defects and its ongoing consequences.

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