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Our Aims

Hypoplastic Left Heart Syndrome is the fifth most common Congenital Heart Defect that occurs approximately 1 in 5000 live births. HLHS is a severe condition and without treatment it is fatal. Twenty 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.

In general, a negative outlook is given to most parents and many opt for the former choice. There have even been cases where families have 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. We also know of parents that have lost children and are devastated when they find out that something could have been done to try and save their babies.

None of this is meant as a criticism of our health care professionals. It is understandable, in these days of rapid development, that it does take time for knowledge to filter down to where it is needed. Also, it is not our intension to encourage parents to go one way or the other. Each case of HLHS is as unique as the child it effects, 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 Defect 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 parents in most states that are eager to help others who find themselves in the same situation. We also provide contact information for other support groups such as HeartKids, Compassionate Friends and SANDS.

Parents that choose to have surgery for their children usually have to commit to 4-5 month stay at the Royal Children's Hospital. Many families have to relocate from interstate for this period to help care for their babies. 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.

As a support group, we welcome comments and suggestions from anyone involved in the care of these special children. The more people that participate, the more effective we can be in in helping others deal with the challenges faced by those that are living with complex Congenital Heart Disorders.
 

AIMS

Hearts of Hope does not set out to provide medical advice. However, staying up to date with current developments in the medical world is important to families that have children with congenital heart disorders. Discussing surgeries, medication, treatment options etc and our own personal experiences can help us ask the 'right' questions of the medical professionals that we rely on to look after the health of our children.

The content  presented on this website and the information provided by our members is published with the intention to support, and not replace, the relationship that exists between a patient/site visitor and their doctor.