Give women the choice: Why the 20 week abortion limit must be relaxed in case of foetal abnormalities

By Devi Shetty and Sneha Iype

Recently, the Supreme Court turned down a request for termination of pregnancy from a 27 week pregnant lady, with a Down syndrome foetus.

Indian law prevents termination of pregnancy after 20 weeks of gestation for major foetal abnormalities. However, many developed countries like Canada allow the termination of pregnancy even at an advanced stage, in case of foetal abnormalities.

The time has come for us to review the law with restricting termination of pregnancy to within 20 weeks. If the mother feels that she is not mentally ready to take care of a child with incurable cardiac problems or Down syndrome, she should have the right to terminate the pregnancy at a later stage.

Operating on a new born baby with a hole in the heart and watching him or her grow up and celebrate life is the most joyful experience a surgeon like me (Shetty) can have. Unfortunately not all the stories I have for my children has a happy ending.

About 5% of the children with incurable cardiac problems need multiple staged operations and generally don’t live to celebrate their 30th birthday. After having built one of the world’s largest paediatric cardiac surgical programmes I (Shetty) am beginning to ask a fundamental question, why are children born with incurable cardiac problems? Can the mother have an option?

Unfortunately, most mothers don’t know they have an option. There are tests to detect complex heart problems like hypo plastic left ventricle or Down syndrome before 20 weeks of pregnancy. Unfortunately, screening 26 million pregnant women a year with less than 15,000 experienced radiologists within the deadline of 20 weeks is a tall order right now in India.

In this whole discussion we always forget the main character around whom the drama unfolds – the foetus, the new born baby and the young adult who goes through the trauma of pain and suffering of multiple surgeries or humiliation of mental retardation. After having interacted with, perhaps, one of the largest number of children with incurable cardiac problems in the world, I (Shetty) can bet that no 20-year-old with this problem is happy to be born; no 20-year-old with Down syndrome if given the power to think is happy to be born; no parent is happy to have a child with incurable cardiac problems or Down syndrome.

But most of them do a wonderful job and love their kids like every other parent. However if they were given a choice to go back in time before the baby was born and bonding took place, we certainly believe most of them would have opted out of it.

As a society we have failed in our duty to educate prospective parents and allow them to make their choice. Twenty weeks is too short a deadline for a doctor to be very certain about his findings and parents to introspect.

Let’s look at the pain and suffering young parents of a child with hypo plastic left ventricle go through. Celebration of birth turns into a nightmare when the baby turns blue. They need multiple complex surgeries, which can be done in very few centres. Recovery after a palliative surgery can at times be very stormy, with a long and stressful ICU stay.

This ordeal keeps getting repeated at least four or five times in their life. Children with extremely complex heart problems need constant monitoring even after surgery. They are vulnerable to chest infection and heart failure. It is sad to see them sitting and watching other kids play when they get breathless and turn blue on slight exertion.

As these children grow up they start thinking and questioning. They will certainly have a question to God: “Why are you unfair to me for no fault of mine?” In a nuclear family it is the mother who bears the brunt as a sick child keeps her awake most of the night.

In the process, siblings are ignored and sometimes marital disharmony and blame game starts. It is the mother who fights this lonely battle, with the outside world knowing fully well that her child may not live to become a young adult.

Is it fair to push the unsuspecting mother into this spiral of misery when the rules of the game are clearly defined the moment the diagnosis is made? By the time reality strikes it is too late and 20 weeks are over.

We would like to request the honourable health minister to convince the government to extend the deadline for termination of pregnancy for incurable foetal abnormalities to 26 weeks instead of 20 weeks. The additional six weeks will give sufficient time for doctors to confirm the foetal abnormality and for parents to accept the reality.

We merely want the mother to have a choice after adequate counselling. We will be very happy at the end of the day if the mother decides to go ahead with the pregnancy.

We are prepared to face criticism from society. However, before expressing your criticism, just put yourself in the position of a mother who has just delivered a baby with incurable cardiac condition or Down syndrome. We strongly feel that she deserves a choice.

Devi Shetty is a cardiac surgeon and Chairman and Founder, Narayana Health. Sneha Iype is Co-founder, Nirvana Films