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Look at the person, not the syndrome! - My Take by Dr Surekha RamaChandran, Chairperson Down Syndrome Federation of India

March 13, 2018

Ahead of World Down Syndrome Day, which will be marked across the globe next week, Dr Surekha RamaChandran, Co-Founder and Chairperson of the Down Syndrome Federation of India, talks about her battles while raising her daughter, who has Down syndrome.

In 1981, when my daughter was born, every pediatrician used the same word, Mongol child. Have attitudes changed in these years? Nothing!

In the eyes of many doctors, children with Down syndrome were burdens that would bring only disappointment to their families and they pressed parents to put their children in institutions. These children, it was believed, would never be of use to anyone, and their birth was treated as a tragedy.

Sometimes I feel that even today, 36 years later, many people feel the same. Societal attitudes have not really changed, except for the few who have lived with it or viewed it closely. I have to congratulate a few doctors who have broken the news very gently and positively. Thank God for those few.

We have also learnt that professionals are the guiding force in our lives. They can encourage or shatter the hopes of the parents. Our lives revolve around you!

Having a child means planning, even if the child is born with challenges! No one has a right to decide that this child may never perform, or disregard the tremendous potential they may have.

Seeing the potential in children with Down syndrome

My first experience with a pediatrician overseas when my child was 18 months was amazing. I was in Rhode Island in the United States and Dr Pueschel, who had an exclusive centre for people with DS, looked at my daughter and said. "This child has tremendous potential."

That day I took it on myself to address every parent with the same words and it has worked wonders. Friends, first be a human being, and then a professional. Look at the person, not the syndrome!

Till date, I cannot think of any parents of a child with DS who would give them up for anything. Love has a way of making statistics irrelevant, and it brings its own kind of knowing. I do not love my daughter any less because she has DS. Her diagnosis says very little about who she is. She is not a disease or a syndrome but an individual- affectionate, naughty, infuriating at times, stubborn, self-willed, and utterly charming.

Certainly she has medical problems and developmental challenges, not faced by other children. But they're one part of a much bigger picture. And in that picture only you are the guiding, dominant factor.

Today, I stand here with a sense of pride and receive all this respect only because of one person - BABLI.

If I produced this child and gave her the extra chromosome, she was the one who worked hard at combating all the challenges while I sat back, watched, and learnt.

When parents come to us with babies with DS, we try telling them that this is a blessing, I have had parents ready to strike me initially. Later the same parents have been the strongest advocates for these children!

Fear, anger, disillusionment, resentment, guilt, just seem to hit the parent. Why me? What did I do? These are questions every parent has asked us.

Lack of guidance

Since I have a child with DS, I can understand all these fears. Friends, sometimes I too feel that the world is against us and then we console ourselves that one day, attitudes will change.

Please refrain from saying that people with DS are mentally retarded. Yes, they have challenges and yes, they are hit by medical issues and by their cognition. If all these issues are resolved, then we have a child who can relate and comprehend better. We are all aware that the 21st chromosome comes with huge medical issues and that the entire medical fraternity must guide us.

Let me tell you how I lost out as I never got any guidance.

In 1981, my child was labelled a mongoloid, considered a terrible waste. I was asked to go home and pray for strength. Not a single doctor gave me a word of encouragement.

I am not blaming them as books in medical colleges state clearly that people with DS are mentally retarded, and will not live beyond their teens.

Despite my fears, I defied the pediatricians and harassed them with a million questions of how and why.

Babli was hypothyroid and we only realised it when she was 17 years. She suffered from constipation and had be subjected to enema everyday. No one suggested physical therapy to help her hypotonia.

She was born with cataracts, and had four major eye surgeries in the first year of her life. She has vision in one eye and 5% in the other.

She nearly lost her life when she was 21 months old to an acute respiratory infection, that ended in pneumonia. She was in semi-coma for six weeks and doctors had given up hope.

She had no therapy for balancing and walking.

There were suggestions like, put her in a centre for the blind, or for the deaf, or with the mentally challenged - why, why why?

She has all her faculties, so why were they so ready to put her away? She entered regular school and was tormented by teachers and the principal. The children were more tolerant and taught her little tasks.

My personal experience with medical and para medical members has been a bittersweet one.

My child, Babli is a tough cookie. She is a great dancer and gives performances with confidence.

Today she teaches yoga to people with Down Syndrome and earns a living. Happy, loving, and caring, she is a survivor.

She led, I followed.

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