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."
Ques. Is there anything special you would advise the parents to ensure that the baby grows as normally as possible?
Ans. Love your child abundantly. Don't consider your child a curse. Children with Down syndrome are extremely sensitive. They can sense your rejection and sink into depression very easily. They have very high social intelligence. Encourage them to interact with the mainstream society and they will soon become independent. Start early intervention programs to minimize complications later in life. The condition of individuals can be vastly improved through training. So the earlier you start the better the results.
In my experience I have found that some pediatricians are the biggest roadblocks to the natural development and maturation of a child with Down syndrome. All my life I have been telling pediatricians, "You have no right to decry an individual's life, let alone setting limitations to human growth and potential." So my biggest advice to parents who have just learnt that their child has Down syndrome is: "Don't let your pediatrician frighten you." The love and care that you extend to your child should decide your child's lifespan and happiness, not the "experts."
All doctors used, and most doctors still use the word "WASTE" on a child!!!! The following negativities were actually pounded into my head from the day my daughter Babli was born... so much so , it seems to me that Babli sensed this and decided to take the bull, sorry, the Doctors by their horns and disprove their prediction. For example: -
• She will never speak.... She speaks 3 languages and can chant the Vedas!!!
• She will never walk ... has performed her Arangetram (Classical dance performance) and can balance on one foot and regularly does Yoga
• She will never have rational thinking.... She is more clear, rational and sensitive than my so called "NORMAL" son who is 4 years her senior. Ques. Compared to other countries especially the West how does India fare with individuals with Down syndrome?
Ans. Public awareness of Down syndrome is fairly high in the West so the child is not seen as a "freak" in public places, unlike here. For many years our school text books had just a very rude description of a baby with Down syndrome as a wrongly made baby with "Mongoloid features."
Apart from health experts trained to deal with these individuals there are infant welfare centers, health commissions and councils offering trained baby-sitting services so that the parents can take a much deserved break every once in a while, early intervention centers, local play groups for children and well organized support groups for parents.
Also, in the West there is extensive networking and parents support each other on Facebook and Twitter regularly updating their knowledge on dealing with Down syndrome through magazines, journals and other resources.
Awareness is picking up here in Asia, mainly due to the initiative of parents of children with Down syndrome who want to share information and tips and make it easier for parents whose child has been recently diagnosed with Down syndrome. We are continuously fighting the myth that a child with Down syndrome is a curse on the family that is best kept locked with minimal necessities and left to die.
Support groups are springing up in many Indian cities. Outside India, I initiated a support group in Nepal that is now efficiently managed by Sheela Thapa. More recently we flagged off an awareness program in the Middle East and we are overwhelmed with the response from Dubai.
Ques. How can Medindia as a leading health portal from Asia - help your cause and become a partner in your endeavour to help these individuals?
Ans. If you are determined to help a population you can do it in a dozen different ways. Medindia can be a communication channel to propagate the message of hope to parents of a Down syndrome child that they are not alone in their suffering. There are thousands of families willing to share with them their life stories of trials and triumphs in their effort to prove that their child is entitled to good health and happiness as any other.
Blog posts supplying more tips, resources and ideas to help encourage parents deal with the situation and be informed of the best practices in early intervention programs would definitely help. You can draw more worried parents into the network to share news and events of Down Syndrome Federation of India and initiate fresh support groups in local areas where people can meet and exchange notes. Or just direct them to us.
Parallely you can also raise public awareness on Down syndrome and sensitize people into accepting these individuals into their fold. Perhaps you can arrange for a regular column to inform people better about the syndrome and dispel myths surrounding it.
After Dr. Jack Warner died, Iam working with Dr. Thiel to import nutritive supplements from the United States for children with Down syndrome and making it available to other parents because they are not available in India.
Ranbaxy and Tablets India are hesitating to step in to facilitate matters for us, citing low profit margin. We need help in that area.
Ques. Are there any special schools that you can recommend?
Ans. Sorry. No. I will never recommend special schools for children with Down syndrome. The problem with special schools—at least in India is that children with different disabilities such as Autism, Down Syndrome or Cerebral Palsy are all huddled together and children imitate each others' behavior. For example, children with Down syndrome are generally meek and docile, but when they see an autistic child throw a tantrum they imitate the behavior immediately.
Children with Down syndrome can be trained early to fend for themselves very well and with early intervention and proper training, good diet and continuous care they can join in regular schools from primary classes. The more they are integrated into the mainstream the faster they will grow and learn to be independent.
Ques. Can you share with us a few cases where you witnessed sorrow turning to hope?
Ans. My own daughter was dismissed as "hopeless bundle of sorrow" by pediatricians who predicted she wouldn't live beyond 14 years. My baby's soft spot on her head was open and caved in and for an entire day I tenderly ran my palm over my baby's head chanting, "Please heal….Please heal" as if it were a mantra. By the end of the day the anterior fontanel closed firmly.
You will be amazed to see how well parents from the lowest socio-economic groups have taken things in their stride and have nurtured and trained their children with Down syndrome. I know a teenager with Down syndrome who took complete care of her mother and nursed her back to health when the mother was admitted in a hospital for treatment. I've found in my experience of working with these children all these years that somehow faith finds a way of setting things right for everyone involved with these children.
Ques. Do you support prenatal genetic counselling, screening using ultrasound, aspiration for Down's syndrome and abortion?
Ans. I definitely insist on amniocentesis or prenatal screening for all expectant mothers irrespective of whether there is a known genetic abnormality in the family or not. As for abortion, that is a choice the parents have to make. I have known parents who have opted to abort a malformed baby and I also know parents who were informed of their baby's Down syndrome before birth and yet decided to keep the baby and face the challenge of nurturing the child.
Ques. Would your organisation support others who wish to take up such work elsewhere and if so how could you help out?
Ans. Most certainly. Babies with Down syndrome are born at the same rate into families cutting across social, economic and racial backgrounds. Bound by a common pain and a fierce determination to help themselves and their differently abled children, parents of children with Down syndrome are now coming together in India as never before to see these children grow up as normally as possible.
We encourage smaller support groups in local areas where parents can meet regularly and help each other. All you need is to get in touch with us. Our forum will gladly share knowledge on the current medical advancement in dealing with the complications triggered by Down syndrome.
We regularly invite health experts from different parts of India and abroad for workshops conducted to help parents clear their doubts and cope with the challenge of raising their children. Apart form initiating day care centers for children with Down syndrome, we arrange to fund early interventions and medical treatment for complications arising from the condition.
"Life does not have to be perfect to be wonderful." - Annette Funicello
People with Down syndrome are different. Yes. But it is in the infinite variety of all creation that the world becomes complete.
A little sensitivity is all that Dr. Rekha asks of everyone to make this world beautiful and all inclusive—where the differently abled such as those with Down syndrome are given their space and encouraged to live with respect and dignity.