Medindia spoke to Dr. Rekha Ramachandran, President of the Down Syndrome Association of India (Tamil Nadu chapter) who has spearheaded the need to understand, support and improve the quality of life of children with Down syndrome.

Dr. Rekha Ramachandran has relentlessly worked to raise public awareness on Down syndrome which is not a disease but a genetic disorder that happens when the baby gets three copies of chromosome 21, (Trisomy 21) instead of the usual two. Dr. Rekha Ramachandran is the co-founder and chairperson of ‘Mathru Mandir’, an institution that provides rehabilitation, support and therapy for individuals with Down syndrome while offering day care services to innumerable children from all over India and the Middle East.

This interview highlights her personal crusade starting in 1981 and giving meaning to the life of these children and adults, who are described as ‘Waste’ by many doctors.

There are over a million people in the world with Down Syndrome and the estimated incidence is about 1 per 800 to 1,000 births. Children with this condition have special needs but above all these sensitive individuals need to know that they are wanted and they are loved like any other person in the world and then they bloom like a flower.

The syndrome is named after John Langdon Down – a British doctor who described it in 1866.

There is huge requirement in our society today for local ‘support groups’ for this condition. Medindia has agreed to provide Dr. Rekha support in establishing such local support groups through their own Social Networking Group and providing her with a regular column.

Ques. What prompted you to take up improving the quality of life of individuals with Down’s syndrome?

Ans. My baby born on January 8, 1981 with Down’s syndrome initially scared the living daylights out of me. She happened at a time when knowledge about rearing and caring for special children was abysmally low in India. Almost everyone I turned to, especially pediatricians seemed to think nurturing my baby was a “waste of time” and it should be easier to give her away. Petrified though, I was, my maternal instinct convinced me that my daughter was God’s carefully chosen gift for me and I was going to give her my best attention.

I set about on a war footing avidly learning a lot about Down syndrome and the possible medical complications it entails. I even completed a doctoral study in ‘Cognitive Deficit and Depression’ in Down syndrome. Dr. Jack Warner in Fullerton, USA taught me the nuances of the syndrome and I am convinced that by providing a quality life, early interventional training, proper medication, diet, and by showering love and attention on Down Syndrome children, every single description attributed to these individuals like drooling mouth, bald patches, sagging skin plagued with infections, can be re-written ..…..Well, almost.

Today, when I look at my daughter who walks, talks, sings, dances and behaves like any other person, I am encouraged to strengthen other parents into accepting their “special” children and reassuring them that their hard work will bring wonderful “rewards” that are so difficult to explain in words. There are now more than 4000 happy families with a Down syndrome member in our forum and we constantly reach out to improve the lives of many more.

Ques. When parents have their baby diagnosed with Down syndrome what are the things they should do to help the baby and also to some extent help their emotions?

Ans. Parents need support and guidance from doctors, counsellors, family and friends to handle the initial shock and disappointment and to cope with the pain and fears that loom large when their baby’s future threatens to remain a question mark.

• It may take months to regain your emotional balance, but learn to accept the situation as soon as possible for your child’s sake. Your child needs your instant attention

• Take one day at a time. The day your “special” baby is born, try not to worry who will care for your child after you are dead and gone

• Try to eat and sleep well and ward off depression. Your baby can sense negative feelings and feel unwanted

• Don’t blame yourself for your baby’s condition. There is absolutely no medical evidence to support your feelings of guilt

• Get to know your baby and begin to care for him/her. It will help calm your distraught nerves

• There is no school to teach you to be a good parent for your baby. You just have to re-invent yourself

• Your child may have any number of complications such as congenital heart defects, hypothyroidism, hypertonia, obstructed digestive and excretory tracts early in infancy with the tendency to increased susceptibility to infection, upper tract respiratory problems, eye problems and childhood leukemia, to name a few. The good news is, your child will be a fighter and teach you to be spirited. Always.

Ques. Have you enough support from funding organizations? What kind of support have you received from the government and since when?

Ans. No, we don’t have any organization’s funding for our forum. We manage by pooling in our own resources. For the last two years, the program for screening for Down syndrome has been undertaken by the Down syndrome association of Tamil Nadu as a part public-private partnership along with the government of Tamil Nadu.

Ques. Is there any special legislation in the country to protect the interests of individuals with Down syndrome?

Ans. The Union Ministry of Social Justice and Empowerment recently launched the ‘Niramaya Health Insurance Plan’ for the welfare of persons with autism, cerebral palsy, mental retardation and multiple disabilities. The scheme aims “to encourage health services-seeking behavior among persons with disability, besides improving the general health condition and quality of life of persons with disability.”

National Insurance identity cards are currently being distributed by the District Rehabilitation Department of each State government.

Each state government in India gives a maintenance allowance for disabled individuals and Tamil Nadu government gives Rs. 500 per month.

Indian Railways offers a concession of 75% for a disabled person’s travel with an escort. Bus concessions are given for travel between place of stay and School/Disability Center/Day Care

There are special provisions in the Income Tax Act for persons with disability, that is also applicable to parents/legal guardians of persons with disability.

The National Trust Act passed in 1999, gives the right to “parents or relatives or registered organizations to ask for the appointment of guardian for the person with disabilities even after they are 18 years of age.”