DOWN SYNDROME CHILD

From Sampath’s Desk:

PARENTS’ MINDSET MAKES ALL THE DIFFERENCE TO 

A CHILD BORN WITH A DIFFERENCE

This is not a tell-tale but a tearful real life episode. An affluent IT professional couple abandoned their six-weeks-old baby girl born with ‘Down Syndrome’, a genetic disorder with multiple health problems that might cost the parents heavily for medical treatment and raising the special child. The sick baby was discarded by the parents when they came to know from the doctor that the multiple-problem baby needed a surgical intervention at the first instance at a cost of nearly ₹5 lakhs. In fact, at the time they visited the doctor and subsequently when the baby-girl was handed over to the Child Welfare Committee on the parents abandoning it, the child was in a bad shape with breathlessness having been wrapped in a soft towel with an oxygen hood and ryles tube.  

 

The doctors made no secret of the health of the baby born with the Down Syndrome in that the condition being critical and almost life-long one it was difficult to predict her life-expectancy as it depended on how the child grew. The child’s health condition therefore needed to be observed from time to time according to medical parameters. And despite being counseled by the Child Welfare Committee on the treatment options available and how quality of life could be improved for the special child that of course entailed medical expenditure, the parents insisted on dumping their baby without compunction.

 

Parents were enlightened that Down Syndrome is a set of physical and mental deficiencies caused by a gene-problem that happened usually before birth. Children who have it tend to have certain typical physical features such as a flat face and a short neck. They also have some degree of intellectual disability. The condition varies from person to person. But in most cases, it is mild to moderate. Although Down Syndrome is a lifelong condition, with care and support, the afflicted children can grow up to have a healthy, happy and productive life with outside support. Parents and the doctor of the Down Syndrome child are expected to be aware of the range of psychomotor potential so that early intervention, schooling and community placement are suitably provided. With dramatic improvements in management of the condition already registered and the ones likely in future in the ever advancing medical world, one can expect great improvement in the quality of life of special children including longer life-span. What is needed is the conviction and commitment to raise the special child with lot of love and affection.

 

With the parents remaining unrelenting, the baby was taken over for care under the ‘cradle baby’ scheme. After the parents left, the baby was obviously crying for her mother and it took at least two days before she could be pacified. The episode is really moving and tear-jerking.

 

Be that as it may, let us look at another episode. I happened to see a short documentary film released by the Health and Child Welfare Ministry on Doordarshan. In that short film, a childless couple – specifically the wife - comes forward to adopt a ‘cradle baby’ with full knowledge that it had HIV infection and despite the doctor’s opinion and caution that the child could not be expected to live longer if costly and continuous treatment was not given. The adoptive mother was specifically told that the baby boy would have to be under medical treatment throughout his life. Instead, she was offered a different healthy baby. Politely refusing the offer, the adoptive mother explains that she still preferred to adopt the sick child only, since she would not allow him to die as an orphan, as he was already once orphaned by his biological parents and got enrolled under the ‘cradle baby’ scheme. “No one knows how long he would live? And, at least as long as he is alive, I want to give him the much-needed motherly care”, said the lachrymose adoptive-mother. She doesn't want the child – already once orphaned – to die as an orphan but in the laps of his adoptive parents so that his soul could rest in peace! The documentary ended showing the child growing well with good medical treatment.

 

What a contrasting line of thinking in the two episodes?

 

Yes, parents’ mindset difference will make all the difference to a child born with a difference!

WORLD DOWN SYNDROME DAY is observed every year on March 21.

 

 

R.SAMPATH

6/11/2020