Why so Serious?

State of Down Syndrome In India: Facts & Figures

Down Syndrome

Down Syndrome affects 23,000-29,000 children born in India every year. Though the numbers are alarming but there is very little open dialogue on this topic in India. Though it is not fatal, not in the developed countries but in India it continues to be fatal. This is mostly because of the low awareness levels and outdated medical facilities.

What is Down Syndrome?

It is a congenital disease arising due to defect in chromosomes which results in intellectual impairment and physical abnormalities. This is a gene defect at birth or before birth and is a life-long condition. Normally a person has 46 chromosomes but a person suffering from this condition has 47 chromosomes and having an extra chromosome disrupts the way body and mind function.  Kids suffering from this genetic disease are at a greater risk of childhood leukemia, heart defects and immune and endocrine system dysfunction.

People suffering from D S usually have flat faces, upward slant eyes, a short neck, a single deep crease across the palm of their hand, small stature, and low muscle tone. They may or may not possess all of these characteristics. It was in the late nineteenth century when Langford Down who is also known as the “father” of the syndrome published an accurate description of a person suffering from this condition.

Scientists have identified three different types of D S;

  1. Trisomy 21: This occurs when there’s an error in the cell division called ‘nondisjunction’ which results in three chromosomes in an embryo instead of two.
  2. Mosaicism: This occurs when there’s a mix of two types of cells, some containing 46 chromosomes and some with 47. The ones with 47 contain the extra 21 chromosome.
  3. Translocation: This type is relatively less common. In this scenario, the number of chromosomes remains 46 but an additional or partial copy of chromosome attaches to another chromosome.

Down Syndrome in India:  India has the highest number of people suffering from Down’s Syndrome in the world. The numbers are alarming but what is more frightening is the fact that this condition is fatal in India due to negligence, lack of awareness, and obsolete medical and technological facilities. This congenital condition often comes with congenital heart diseases which can be treated. But a vast majority of Indian doctors advise against surgery for infants whose body weight is less than 10KG because they are of the opinion that such kids have a slim or poor chance of survival. This leads to further complications like pulmonary hypertension which can lead to a child’s death. Out of the 23,000 to 29,000 kids born with Down Syndrome in India every year, the survival rate is only 44% for those who have congenital heart disease. .  Improved life expectancy in rich nations has been mainly attributed to early surgical intervention and better medical care.

There are a handful of organizations that are dedicated to help and support individuals suffering from this congenital condition, to name a few; Down Syndrome Federation of India, co-founded by Dr. Rekha Ramachandran offer day care services to individuals with special needs.  This organization was established in the year 1984 and today they provide services not just to kids in India but also operate in the Middle East. The also hold annual awards Another organization working for the same cause, Down Syndrome Care Association, registered by the Govt. of Maharashtra, started in the year 2006 caters to people suffering from this medical condition.  

As a society we need to increasingly work towards the widespread of education, knowledge, and acceptance of Down Syndrome and diseases that come with this condition.