What is Congenital Heart Disease (CHD) ?

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 <

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 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.


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.


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.


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.


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.

Neglected, unchallenged, indeed often undetected, CHD pervades communities, affecting the rich and poor alike, in developed as well as backward countries.

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." LEARN MORE

Dr. Mani is simply amazing in his passion and dedication to his cause. His knowledge and ideas about personal fund raising have also helped and inspired many other people - like me. - Beth Kanter