Today in this growing
population, more children with heart disease have a future which previously
would have been unimaginable. Survival for children with congenital or acquired
heart disease is improving with advances in surgical and medical treatments.
The duration of survival has increased for almost all forms of Pediatric heart
disease, such that approximately 90% of children born with congenital heart
disease are now likely to reach adulthood. As survival rates increase for
children with complex heart conditions, the number of children living with a
range of complexities is also increasing. This brings forth a new set of
considerations and challenges in medical management.
Experiences in the cardiac
intensive care unit can be especially stressful for parents of neonates with
complex heart disease who may need more than one operation during their first
few months of life, with the time between surgeries as particularly risky.
Preparation for hospital discharge after cardiac surgery is critical, and
recent times have seen a growth in the number of home monitoring programs being
implemented for babies at higher risk. As these children grow up, their needs
are invariably complex and may extend beyond the heart. In order to optimize their outcomes a comprehensive approach to medical management is recommended,
involving a multi-disciplinary care team and continuous quality improvement
methods to ensure standardized care.
As new treatment options
continue to push boundaries, children and families are being confronted with
the consequences of those options. In most cases, the future for children with
heart disease is adulthood, but with some additional challenges that are beyond
the normal transition from adolescence to adulthood. Ensuring that adult
patients take responsibility for their health and attend their clinic
appointments is crucial, as well as coping with the possibility of a shortened
life expectancy and the prospect of deteriorating health, albeit many years in
the future. Inevitably there are those for whom palliative care will be a
consideration, and the family left behind becomes the focus of the
professionals who had previously cared for the patient. An increasing number of
Pediatric heart patients are now surviving, but in order to ensure that
outcomes are optimised it is essential that those delivering medical and health
services continue to improve the care that they provide, learn from successes
and failures, and use innovative methods and tools to continually improve the
quality of care for children with cardiac disease.
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