In the population of around 1.4 billion, there are more than 23,000 to 29,000 children born with Down Syndrome (DS) in India every year. However, even with these disturbing numbers, there is a very little open dialogue on this topic in our nation. The most absurd thing is, this syndrome is not fatal in developed countries, but in India, the scenario is just opposite, and the most obvious reason behind it is the low awareness level and outdated medical facilities.
WHAT IS DOWN SYNDROME?
This is a congenital disease that arises due to a defect in chromosomes, which results in cerebral impairment and physical abnormalities. It is a genetic defect that develops at birth or before birth, and is a lifelong condition. Normally, a human being has a total of 46 chromosomes, but a person suffering from this condition has 47, and having an extra pair of chromosome upsets the way the body and mind function. Children who suffer from this dysfunction are at a larger risk of childhood leukaemia, get heart defects, and immune and endocrine system disturbances. “Being a genetic condition, it requires intensive management, in the form of medicine, surgery and habilitation,” says Dr Mansoor Alam, Developmental Specialist, Institute for Child Development.
People who suffer from DS, generally have flat faces, upward slant eyes, a short neck, a single deep crease across the palm of their hand, small stature and a low muscle tone. Although, it is not mandatory that the person will possess all of the aforementioned traits. It was in the late nineteenth century, when Langford Down, who is also known as the father of DS, published a detailed description of a person suffering from this condition.
DIFFERENT TYPES OF DS
SCENARIO IN INDIA
India has the highest number of people suffering from Down Syndrome in the world, which is ironic considering the absence of knowledge about the topic. “There is an immense lack of awareness amongst expectant parents about this medical condition, though this is one of the most common chromosome abnormality in humans,” says Dr Subhash Rao, Consultant Paediatrician, Hiranandani Hospital, Vashi-A Fortis Network.
This is a frightening situation due to the fact that this condition is fatal if neglected and not treated properly. As already mentioned before, DS is a congenital condition which often comes with congenital heart diseases that can be treated. But a large majority of Indian doctors recommend against surgery for infants whose body weight is less than 10kg because they are of the opinion that such kids have a slim or no chance of survival. Ignoring it from a young age can lead to further complications like pulmonary hypertension, which might lead to a child’s death. Out of the tens of thousands of cases of DS in India, the survival rates are still 44 per cent for those with congenital heart diseases. “The general public is not aware of DS as very few medical consultants provide basic information about it. In fact, parents don't want to talk about their child if he or she has the condition,” says Dr Mansoor. The shame about this topic is mainly because of the series of misconceptions that it holds. “In India, any baby born with a congenital defect is considered as a ‘curse from god’ or a ‘bad omen’ by the family members, especially the seniors in the family, and relatives. Hence, such babies are ignored and not given the required medical support,” says Dr Subhash. He further adds, “There is a lack of awareness and knowledge about training and equipping these children so that they may lead an independent life. There are many support groups, and one should explore them so that they get the right aid and support when bringing up these children.”
With all honesty, we believe that as a society we need to work towards widespread education, knowledge, and acceptance of Down Syndrome, and diseases that come with this condition. “With the help of advance medical facilities, better availability of Physiotherapy and Occupational Therapy centres, access to special schools, adequate and appropriate vaccinations, and better treatment of the coexisting heart disease, we are now witnessing an increase in the life expectancy of people with DS, since the 1980s,” says Dr Subhash. We agree that it is an emotional turmoil for the family and also a financial strain. It takes a lot to accept that your child is born with this condition. But rather than grasping the negative aspect, these situations call for an optimistic approach. Dr Mansoor finally says “As medicine advances, the possibility of surviving with DS has also increased. Good prenatal management with early intervention has saved a lot of children with DS.”