Today is World Down Syndrome Day, an international platform for Down syndrome awareness. According to the Down Syndrome International, today can, “help raise awareness of what Down syndrome is, what it means to have Down syndrome, and how people with Down syndrome play a vital role in our lives and communities.”
I have a friend whose world crashed when she was around 20 weeks pregnant. In some ways, she thought it was ruined.
She gaped for words and stood in uneasy silence when her doctor diagnosed that her unborn baby was suffering from Down syndrome. All the joys she equated with motherhood, the aspirations and dreams, were erased with one report.
Even though she was overwhelmed with emotion, abortion was never on her mind.
Down syndrome is a condition in which an individual is born with an extra copy of the 21st chromosome (each chromosome has two copies but in Down’s there are three -that’s why it is celebrated on 21/03). This additional genetic material slows mental and physical developments. But its something parents can learn to tackle.
My friend, on the condition of anonymity says, “The first question which was hitting my mind was, why me! But now I can’t thank God enough for Gayatri in my life.”
1 in 1000 babies in India are born with Down syndrome and yet there is very little awareness around it. There are more than four lakh Indians living with this disorder.
On the occasion of World Down Syndrome Day, take a moment and read some FAQs:
1. What Causes Down’s Syndrome?
Down syndrome is caused by an extra set of chromosome number 21. Every cell in the body has 23 pairs of chromosomes, one from each parent, but Down’s occurs when one parent contributes extra genetic material. Older mothers have a higher chance of having a Down baby.
2. Your Child Is Not Alone
Down syndrome is the most common chromosomal genetic abnormality in children across the world. The risk of Down’s in the baby increases exponentially if the woman conceives after the age of 35 years.
Many children with Down syndrome are also born with heart, intestine, ear, or breathing problems.
Almost all good clinics in urban India offer the Down’s screening tests - which is undertaken by 13 or 14 weeks of pregnancy. It is a non-invasive screening test which tells the likelihood that a foetus will turn out to have Down’s syndrome. For those in the high-risk group, the next test conducted by placing a needle into the uterus will be done to diagnose Down’s syndrome.
3. Down’s Children Can Live Longer, Fuller Lives
People with Down are living much longer than in the past, thanks to treatments for their health issues. While the average life expectancy in 1983 was 25 years, today it is 60 years.
4. The Road Ahead Will Be Tough
There are many challenges facing families caring for children with Down syndrome, including a high likelihood that their children will face surgery for heart defects, respiratory problems in infancy and Alzheimer’s and certain cancers in adulthood.
A new parent of a baby with Down syndrome is going to be scared, confused, worried, and grieving for a long while. However, with proper support and advanced medical infrastructure, the quality of life of Down’s children is not impaired.
5. As a Parent, You Will Happy Again
Even if the diagnosis feels like the end of the world, every day is full of challenges, the good news is that most families with a Down’s person are happier and more positive than they were without him or her.
My friend whose daughter is now 3 looks back at her baby pictures and has mixed emotions. ‘I want others to see Gayatri first, not the characteristics of Down syndrome that are visible.’
Her daughter is the most bubbly pre-schooler I’ve met. She’s so content with herself and loves how she looks. After what the family has gone through, it never seemed like it, but they’re happy in their regular life again - doing the regular things any parent of a 3-year-old would do: beach vacations, garden walks, play dates and playschool albeit a special one.
(This piece was first published on 21st March 2016 and is being re-published from FIT’s archives to mark World Down Syndrome Day.)
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