Recently, I came across the news of the Supreme Court rejecting the plea of a couple to abort a 26 week old foetus with Down Syndrome. A seemingly routine rule book decision and probably one which I like most others would have normally overlooked. Except that in this case, it brought back extremely painful memories – It was 7 years back and I was expecting my child. Being a complicated pregnancy I was subject to multiple tests and medication right from the beginning and just when we had started breathing easy, a test in the 16th week indicated a very high probability of our child being born with Downs Syndrome. We were told by the consulting doctor in a matter of fact tone that our child is likely to be born with physical and intellectual disability and suggested another test for confirming the same, the results for which would be available in 5 days. And those 5 days were the most miserable ones of our life! I recall going through those days in a zombie like manner, too numb to think of what to do next once we get the results.
How did we feel and think – what did we do to deserve this? Is this due to some past negative Karma? Do we keep the child or abort it? If we abort, then how can we live with the guilt of having killed a child? And if decide to go ahead with the pregnancy, will we be able to accept it just like a normal child? And most important, who would take care of it once we are dead and gone?
By God’s grace and serendipity, the second test results were negative and eventually we were blessed with a normal & healthy child. And we moved on, only too glad to bury those dark days in the recesses of our memories. Till this headline made me think deeper about the judgement.
What is Downs Syndrome – It is a genetic disorder caused by the presence of all or part of a third copy of chromosome 21. It is typically associated with physical growth delays, characteristic facial features and mild to moderate intellectual disability. As adults, their mental abilities are typically similar to those of an 8- or 9-year-old. They also typically have poor immune function and generally reach developmental milestones at a later age. They have an increased risk of a number of other health problems, including congenital heart defect, epilepsy, leukemia, thyroid diseases, and mental disorders, among others.
What is the current support offered by the government?
- The ‘Niramaya Health Insurance Plan’for the welfare of persons with autism, cerebral palsy, mental retardation and multiple disabilities.
- Each state government in India gives a maintenance allowance for disabled individuals gives Rs. 500 per month.
- Indian Railways offers a concession of 75% for a disabled person’s travelwith 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 Actfor 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.”
But these measures are woefully inadequate – There is a huge requirement in our society for local support groups for parents and children of this condition, and most such groups in India have been formed by the parents themselves. The process has to start from the gynecologists and pediatricians themselves, who need to show more sensitivity and responsibility in helping the parents face the situation and accept their special children. Parents need counselling to help overcome the initial shock and disappointment, regain their emotional balance and accept the situation. The public needs to be made aware and sensitized about the characteristics and needs of such individuals so that the children are not viewed as freaks in public places. Inclusion within society is a must to help parents face the situation and improve the quality of life for their children, more so for those from the less affluent and socially backward classes. For a society which is still grappling with female foeticide and wellbeing of girl children, it is very essential that all kinds of emotional and psychological support is extended to these families to help them love their children abundantly and see them grow as normally as possible.
And the good news is that there are many success stories (like the case of Dr. Rekha Ramachandran’s daughter Babli), where both children with DS and their parents have fought against the odds to become educated and live normal lives. Rather, the families consider themselves blessed and feel themselves warmer, closer and more harmonious with better marital ties gained from the positive experience of the “Down Syndrome Advantage”.
Then, is the current anti-abortion judgement a right one? As per current law, abortion of foetus is permissible only when the mothers life is at risk and that too upto 20 weeks of pregnancy only. But, in these special circumstances, it is imperative that the law is not constrained to enforcement of the rule, but rather it should also create an environment conducive to support of the families and inclusion of such children in society. Please do not get me wrong here. I am a firm supporter of the right of life to all. But probably in this cases, the parents should also have a choice to present their case and be counselled sensitively rather than be forced to follow the law blindly.
It is International Downs Syndrome day on March 21st. As we are anyways given to celebrating so many nonsensical days, it would be good if we could give thought and extend support in any manner possible for this cause!
“Life does not have to be perfect to be wonderful.” – Annette Funicello