Foundation for prevention of birth disorders

AIM: PREVENTION IS BETTER THAN CURE

  1. To decrease the incidence of Genetic disorder and Birth defects.
  2. To train Medical personnel in Birth defects and Prenatal Genetic counseling.
  3. To form a National network of referral system for prevention of Birth defects.

Worldwide birth defect is a burning issue. Unlike infectious diseases the complete cure is not possible in larger percentage of birth defect cases due to underlying genetic defect. These defects are huge economic burden on individual families and on nations at large. Many children with birth defects will suffer from severe chronic problems or may face early deaths. All these suffering can be prevented by educating population especially the rural masses by explaining them about causative factors and preventive measures. Most effluent countries are concentrating more on preventive measures, since complete cure is not possible yet in most cases.

According to W.H.O the incidence of birth defects in any society is 4-7%, and all over the world 7654370 children are born every year with serious birth defects
(W.H.O. 1996).

These children should not be treated as simple cases, waiting for surgery or medical treatment. One must look at different spectrum of events in their life and think about practical problem they are going to face in the society; otherwise our approach will be totally wrong with little sensible use.

Every single case of birth defect leads to complex socio-economic problem in individual families and child will face cyclic frustrating events in life, education, employment, marriage and social life. The medical treatment is beyond the scope of families with average below average economic capacity and insurance companies refuse to cover the obvious condition. Net result is child with birth defect and his family will suffer in deep silence, due to unaffordable medical treatment costs. They prefer to remain silent and child is deprived of minimal good quality of life. Many of these miseries can be prevented by proper organization of counseling on birth defects and identifying the risk factor.

The Government and social organizations may provide financial assistance for surgeries or medical treatment. What about follows up visits, maintenance of life long treatment, their schooling, higher education, and employment, reproductive life and lifelong financial and human support. It needs a total scientific approach to tackle this issue of controlling the Congenital diseases and Genetic Defects in the community. It should be a state Level Health programme with proper monitoring and evaluation of the financial inputs in this programme. Simply providing financial assistance to some of the cases and screening programme of few selected group of children attending Health camp attending Government Hospitals is only a part of the programme.The basic preventive measures must be given the top priority to stop the recurrence of this problems

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