CONGENITAL HEART DISEASE ..... a chilling phrase; a lethal constellation of
birth defects of the heart that affect millions of newborn infants and children;
a killer that claims thousands of lives every year.
A fortunate few, mostly in the developed countries, are cured by the miracles of modern medicine.
Sadly, the vast majority do not have access to treatment; they are forced to
lead restricted lifestyles, denied the opportunity to become productive and participating members of their communities.
CHD - A perspective
There are two main varieties of heart disease.
Acquired heart diseases are the consequence of indulgence, excess,
aging or infection. In the recent past, there has been an encouraging drop
in its incidence, thanks to
* increasing knowledge and awareness of the underlying causes
* populations adopting more healthy practices and habits
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On the other hand, Congenital heart disease (CHD) is a more or less
random event. The mysteries that underlie it still remain unravelled. The incidence
of cardiac birth defects has remained constant - at 7 to 8 cases for every 1000
live births - across time and continents.
CHD - A complex issue
Among heart diseases, CHD is unique for a number of reasons:
CHD IS A GROWING PROBLEM
CHD is not a problem that is going away. While other heart diseases are coming
under control, the incidence of CHD remains unchanged. If current trends
continue, 20 years from today CHD will become the most significant percentage of our heart
- and health care - burden.
CHD IS A NEGLECTED PROBLEM
In many countries, patients with CHD live and die untreated. Surgery for heart
birth defects emerged as a specialty in its own right only in the early 1980's.
Even today, surgery for CHD accounts for less than 5% of heart operations performed
world-wide. Dedicated centers for treating CHD are few and far between.
CHD IS A COSTLY PROBLEM
Most complex birth defects of the heart require multiple procedures for cure.
And parents of CHD victims are often young, just starting out in life. Financially
insecure, emotionally strained to breaking point, these young families need
support and guidance.
CHD IS A LONG TERM PROBLEM
A CHD patient, after treatment, can look forward to living 50 to 80 years more!
The path ahead, however, is strewn with obstacles and uncertainties. Late complications;
employment and insurance; marriage and children; all are areas of concern.
CHD IS A SILENT PROBLEM
High cholesterol, bypass surgery, angioplasty and gene therapy are the glamorous
issues, the media superstars of heart disease. Most of the budget allocations
of large organizations are diverted to adult heart disease research. Consequently,
funding for research into CHD is scarce.
CHD - the burning issues today
Seeing CHD in all its persistent, relentlessly progressive horror, it is obvious that
* the causes of CHD need to be detected, and soon
* the problem needs to be highlighted, brought into the limelight
* medical facilities need to be made accessible to all patients
* CHD families need ongoing constant support
* treatment must be viewed as a long-term continuing process
The Solution
When one realizes how few resources are presently allocated to achieving these goals, it is apparent that the first steps are to:
* prepare a realistic plan that will assist in diagnosing and treating CHD, while harnessing the power of the Internet as an action-oriented health education and awareness tool
* create a small community-based inter-disciplinary team structure, and encourage interaction and co-operation among these teams, to develop a networked global CHD organization
As one of the support group managers says about the need for enhancing public knowledge of CHD:
"Setting aside a day of remembrance and celebration of the great medical advances which keep our loved ones alive would honor the unseen battle that children and adults with CHD fight daily. The creation of a day of this kind would help to lift the barrier of ignorance, helping both the families and individuals who currently are affected by Childhood Onset Heart Disease, and those whose lives may be affected in the future."