Little Hearts is an exciting new initiative of the Stella Bella Little Stars Foundation. It is run with a dedicated group of parents of children with chronic heart conditions, who have had long stays at the Children’s Hospital Westmead, in the PICU, Grace and Edgar Stephens wards.
Little Hearts goal is to:
- provide a range of supports to families of children with CHD who require ongoing surgery, hospitalization and/or who have a palliative diagnosis
- provide a support network for families who have lost a child to CHD and
- provide support to families who have recieved an antenatal diagnosis of CHD.
Our main aim is to make the difficult times that heart families endure a little bit easier – by providing direct support and connection to a network of other families who may have a similar experience.
Congenital Heart Disease at Children’s Hospital Westmead.
Each year the Children’s Hospital Westmead treats over 4500 babies, children and young people with CHD. Many of these children do not live close to the hospital and come from regional, remote and surrounding areas in NSW and the ACT, some have even further journeys with some children traveling from different countries. The Edgar Stephens ward is the heart ward at the hospital where many of these children and ongoing treatment and recover from large surgeries. Whilst there are treatments for CHD, there is no cure. Each week in Australia we lose four lives to CHD.
Home away from home
For many children and families, the Edgar Stephens (Heart Ward) at the Children’s Hospital Westmead is their home away from home. Often children come to the ward, after having large open-heart surgeries or significant heart complications. Sometimes children stay at the ward for many months.
Being a hospital family is tough. There is often so much pain, uncertainty and stress with having a child with a severe or critical diagnosis in hospital. Many children face very tough health journeys and face multiple surgeries and medical interventions.
Meanwhile, life goes on and families still have to work out how to juggle competing priorities – other children, relationships, running households and paying bills.
Most people think there is a massive support network around long-term hospital families, but the reality is very different. A parent usually stays on the ward to be close to their sick child. They have often come to the hospital in an emergency – if they are lucky with an overnight bag. They have the concern of other family priorities (sometimes the high cost of relocating other children to nearby accommodation). The hospital is not able to provide meals for parents and one of the most difficult things that parents struggle with is providing themselves with basic essentials, such as meals and toiletries.
Families also struggle to find the means to celebrate and mark special events and milestones – which is such an important thing to do for all children but especially important when you may not know your child’s future.
Sadly, every week, four children in Australia will lose their battle with CHD. These children are sons and daughters, brothers and sisters – they have often showed us so much bravery during their lives, they are so loved and so intensely missed by their family and loved ones. We will never forget the place they have in our hearts and community.
What we want to do in our first 12 months
For our High Care Families
In the next 12 months we aim to:
- Provide vouchers for food, petrol, and other necessities directly through the Edgar Stephens ward to families with children who have a severe CHD or complex medical diagnosis who are struggling financially
- Raise funds to provide small grants for heart families who require assistance with household bills, crisis accommodation, medical supplies and more
- Provide a variety of supports for families with a child who has a palliative diagnosis
- Explore opportunities to provide meals on the ward for parents such as fresh food and freezer meal sponsorship
- Set up ongoing friendship and support for families who are regularly in and out of hospital and have children who have a high care or palliative diagnosis.
- Organize family events, outside of hospital, in Canberra and Sydney to help families build on their support networks.
For our Heart Angel Families
In the next 12 months we aim to establish:
- An advisory group of angel parents to help us to decide the best way to honour and remember children who have sadly passed away from CHD
- A memorial beads program – with new beads available for special dates such as birthdays each year until our heart angels turn 18 and graduate from the program
- An online support group administered by heart angel parents.
For our Hospital Community
The hospital relies on the generosity of donations to make it a special place for very sick children. We have a wish list of things that can make life more comfortable for children and families to live a hospital life.
The wish list includes things such as: new parent beds to ensure parents can stay by their children’s bedside, in kind donations such as entertainment, toys, baby wraps, blankets and zippies, and equipment that can make it easier for families to get out of the ward. These will be sourced by individual fundraising events and drives. A call for assistance and needs of families will be updated on our Facebook site. https://www.facebook.com/littleheartsaustralia/
How you can help
Little Hearts is relies on the kindness of donations from our community. All donations will be provided directly to families in significant need. There are a few ways you can help us.
- Provide a tax deductible donation for small grants for heart families who require assistance with household bills, crisis accommodation, medical supplies and more.
- Donate vouchers for food, petrol, and other necessities
- Provide a tax deductible donation to enable us to set up support programs for our families with heart angels
- Get in contact if you have any other ideas
Join us on Facebook @littleheartsaustralia
How to donate:
You can donate directly by bank deposit to:
Name: Stella Bella Little Stars Foundation
Account Number: 160854121
Reference: Your name
Please let us know if you would like a receipt for your tax purposes.
We’d love to hear from you – if you have ideas or would like to help out any in way.
You can email us at email@example.com or phone Mel Clode on 0419 694 517.