Hypoplastic Left Heart Syndrome is the fifth most common Congenital Heart Disease that occurs approximately 1 in 5000 live births. HLHS is a severe condition and without treatment it is fatal. Thirty years ago nothing could be done for these babies but fortunately, through the dedicated worldwide efforts of health professionals, there is now a great deal of hope for these children.
In Australia 40-50 babies are born with this condition every year. When diagnosed, parents are usually presented with two options:
- Compassionate care/termination of pregnancy; or
- palliative surgery involving a series of open-heart procedures.
When Hearts of Hope was founded, many parents were confronted with a very negative prognosis for their child. Some families sought treatment in the United States as they were not made aware of the work being done at the Royal Children's Hospital in Melbourne. The combination of this lack of information about treatment options for HLHS, and the negative outlook for these children, meant that many parents had no option other than the former choice. Some of these parents were devastated when they find out that something could have been done to try and save their babies.
Fortunately things have changed. There are now three hospitals in Australia offering palliative surgeries for HLHS children. There is also a lot more information available to parents and the medical profession in relation to HLHS in Australia. Even so, more can be done to raise awareness and understanding in the community.
It is not our intention to advise parents on the treatment choices for their children. Each case of HLHS is as unique as the child it affects, and only those directly involved have the right to choose what is best for their circumstances. However, it is vital that facts are available to families to allow them to make informed decisions for their children.
- Hearts of Hope Australia aims to disseminate accurate and balanced information to parents, health workers and the general community throughout Australia.
Being confronted with any Congenital Heart Disease is extremely stressful. Parents, that more than likely, have never heard of conditions such as HLHS are bombarded with information and have to settle on what is best for their child. This, together with feelings that may include anger, guilt, disbelief and the prospect of having to face the high risk surgeries can be overwhelming. Some babies do not survive HLHS while others may have ongoing medical problems. We believe parents should not have to face these issues on their own.
- We aim to support families through our network of volunteers. There are many parents in throughout Australia that are eager to help others who find themselves in the same situation. We also provide contact information for other support groups.
Parents that choose to have surgery for their children usually have to commit to 3-4 month stay in hospital. Many families have to relocate and be away from home for extended periods. Finding suitable accommodation and day to day things such as shopping, transport and care for siblings adds to an already very stressful situation.
- Our network aims to provide up to date information on services and government programs that are available to help families through this difficult time.