Dr. Dinesh Sarda, Pediatric Surgeon & Pediatric Urologist, Nagpur
The society has changed immensely over last century and now people are more freely discussing different issues on social platform, trying to help others for different social or medical problems. Different days like World Diabetes day, world HIV day, World health day etc are celebrated throughout the year to mark the prevalence, improve the situation, find out ways to fight against it, and most important to spread the message to those who are suffering and tell them that the world is with them. Recently World Birth Defect Day passed unnoticed. Being a Paediatric Surgeon I was analysing the situation why it should not be marked on calendar?
If you buy any product and then you realise in few days that there are manufacturing defect in that article. What all emotions do strike your brain? Anger, Feeling of cheated, foolishness that we didn’t realise at the time of purchase, looking for customer care, yelling at the opposite end and finally checking warranty and demanding for replacement or repair. But what, when you are informed about the birth defect (it would be rude if we call it manufacturing defect or defective piece) in the angel who has recently brought the bundle of joy in your life.
What would be your feelings? anger? shame? guilt? Failure? Anxiety? yelling at doctor? Or will it be concern? extra care? or efforts to correct the defect? It all depends on your culture, social values, education and upbringing.
Being a Paediatric urologist and Paediatric Surgeon, (a fraternity of medical science which exclusively deals with correction of birth defects) has witnessed different emotional responses revealing neglect as well as responsibility of parents. I have seen an affluent family neglecting a child completely (even upto child abuse) with minor birth defect.
I have also witnessed a very poor father travelling all the way from Bihar to Mumbai in search of best treatment possible for his daughter born with major birth defect against all odds of being illiterate, financially weak and opposition of family but was carrying the love, responsibility and desire to make his daughter normal.
I still remember a one day old child brought by Police in Corporation hospital of Mumbai. Police had found this child under the Sion Station bridge. She had multiple birth defects. Possibly the child was abandoned because of birth defects by parents immediately after birth. That reveals selfish and irresponsible behaviour of the parents. However this girl was a fighter and had strength to bear all the odds. She had undergone multiple surgeries in 6 months. We all doctors, nurses, wardboys and maids in the hospital used to take care of the child.
Someone used to offer her milk and someone used to take her to garden. But when this cute and sweet child was fit for discharge, unlike other kids, there weren’t anyone to take her home. As per the rules she was to be sent to some orphanage. But every one was upset with this idea. So our professor decided to keep her in ward for few day till all the official formalities were over. Naming ceremony was done in the ward and she was named as “Aishwarya”. Soon Aishwarya became the centre of attention of all ward staff.
This adorable girl had a beautiful smile. Soon she started crawling in ward and going towards pantry in search of milk and bread. The news spread to other wards and she became the recipient of treasure of love, variety of baby foods and gifts. Good to listen and imagine, but what was the future of this child. Finally she was sent to orphanage.
The question still exists what society feels about birth defects. So many times we see the citizens campaigning for rights of some or other part of society. Be it for economically backward class or socially backward class. Be it for political right or for personal right. We see thousands of people gathering to protest for the Rights of some important or sometimes not so important cause. My question is, doesn’t a child born with birth defects has Right to live?
Why he or she should be compelled to face hatred, abandon, shame, pity or orphanage. Its not the childs’ or parents’ fault to have birth defect. There are so many examples that physically handicapped people have excelled in different fields of society. Sudhachandran is an expert Bharatnatyam dancer in spite of having an artificial limb. Ravindra Jain is blind but has composed music for so many movies and television programs.
We all admire famous Indian swimmer Sharath Gaikwad who being disabled with one hand has rose the fame of country worldwide. There are so many unnamed birth defect victims who are actually serving society in some or other way. Why can’t this be a motivation for the parents of child who is born with birth defect.
We, the Paediatric surgeons (although few in India) are dedicated in bringing back the life of these babies as normal as possible. Medical science has now progressed extensively. Majority of birth defects now can be diagnosed and can be completely or partly cured.
Sonography done during pregnancy can diagnose many birth defects. If any defect is diagnosed, your panic button should not get activated. However, that makes us more alert, more prepared to tackle the situation after birth.
I have seen that many parents being responsible as well just try to focus on good things in child and neglect the defects. Its human tendency to get inclined towards things which are comfortable and not towards the ones which puts us in distress. They carry the fear to undergo surgery and correction. So they just postpone or selectively forget about the problem. But what needs to be treated is child’s birth defect and not to listen to your fear.
The key message is to have awareness about birth defects. If your child has been diagnosed to have birth defect, most important thing is not to get panic. Talk with your child specialist and ask him to refer you to a Paediatric surgeon. Once you meet the specialist, he/she will advise you about the future aspect of your child and appropriate time for correction of the birth defect. The surgeon would also tell you whether the defect is curable or not. If yes, accept the situation responsibly and nurture the pregnancy with extra care. Unfortunately many quack doctors suggest the parents for termination of pregnancy, unaware of the fact that majority of them can be corrected and can have normal life. Shouldn’t such quacks be sued for homicide?
Time has come when we should throw away the guilty feeling, shame or ignorance about the birth defects and offer unconditional love and responsibility. Real parenting lies in upbringing of child the way he is born.
(Author is a Paediatric Surgeon In Nagpur. Queries can be directed towards knhdhantoli@gmail.com)
