“What’s the use of diagnostic facilities if we can’t find a solution after diagnosing a defect in the foetus?” asks Dr Nikhil Datar, gynaecologist who counselled the woman. “What’s the use of diagnostic facilities if we can’t find a solution after diagnosing a defect in the foetus?” asks Dr Nikhil Datar, gynaecologist who counselled the woman.

When she found out last September that she was pregnant, the 28-year-old Mumbai resident was excited, and she quit her job in a private company’s administration department to “solely focus” on her baby. For three years, her husband, a 31-year-old HR manager, had planned for this day.

“Now I wish my baby dies after birth,” she says, her eyes swollen with tears and lack of sleep.

On Monday, the Supreme Court rejected her appeal to undergo an abortion. A diagnostic test revealed that the foetus suffered from a birth anomaly called Arnold Chiari Type II syndrome — an underdeveloped brain and a distorted spine. On Tuesday, as Mumbai celebrated Gudi Padwa, she sat with her father and husband in a doctor’s clinic, crying, despair growing inside her.

“We are not allowed to abort an abnormal foetus. Does the government assure financial and health-care support if they are forcing the baby to be born?” her distressed 60-year-old father says.

It’s a question whose answer is trapped in nine years of legislative logjam as the amended Medical Termination of Pregnancy Act, 2014, awaits Cabinet nod.

Under the proposed new law, the maximum age until which a foetus can be aborted goes up from the current 20 weeks to 24 and, more importantly, among the reasons for abortion will be a “grave injury to her (mother’s) physical and mental health.” Experts have long argued for raising the limit from 20 weeks because several birth defects are diagnosed much later.

The amendment may not have helped this Mumbai couple — the foetus is 27 weeks old — but if it had been in place and if the abnormality had been detected earlier, the family could have averted the trauma.

All those if-s are merely academic now as this Mumbai woman will be the second one this year to be denied permission to medically terminate her foetus after 20 weeks.

“What’s the use of diagnostic facilities if we can’t find a solution after diagnosing a defect in the foetus?” asks Dr Nikhil Datar, gynaecologist who counselled the woman.

Her fears aren’t misplaced. Her younger brother, 27, suffers from a similar brain defect. “I have looked after him for 10 years. We know how helpless parents can get seeing their child physically and mentally disabled,” she says. She has to lift her brother, who is paralysed waist down, to feed him or to make him sit in a chair. He has to be rolled over every two hours to avoid bed sores. He has not left home since birth due to this defect.

“I can’t see my child bear this pain. I am not sure if I ever want a second pregnancy now,” she says.

Her father, a peon, is nearing retirement and dreads the thought of another child with similar deformity. “My wife could not detect the defect in her pregnancy. But now we have the opportunity to know the defect before birth. Why are we forced to bring such a child into this world?” he questions.

She was married on March 9, 2014, in Diva, on northern fringes of Mumbai. With her husband, she lives in a rented flat. “We planned to have a baby few years after marriage. When she became pregnant the first four months were the happiest in our lives,” the husband recalls.

They started consulting a Brihanmumbai Municipal Corporation (BMC) maternity home in Borivali near her parent’s house. Her first sonography was conducted after six weeks, the second after three months and the third, towards the end of the fifth month. It was this one that revealed a certain anomaly.

“The doctor didn’t tell us anything. Just asked us to do another sonography and return after a month. I had doubts, I decided to consult a private doctor,” she says. That was March 4. Within a week, she consulted gynaecologist Datar who confirmed the Arnold Chiari malformation.

“Chances of survival are rare. The baby’s brain is not developed,” he told The Indian Express, adding that abortion in the 24th week was prohibited and that’s why the family had to knock on the apex court’s door.

Then there were delays — the court holiday due to Holi followed by the doctor’s strike which meant that KEM Hospital could submit its report to the Supreme Court only on March 25.

On Monday, the SC observed that there are chances the baby may be born alive. “The permission was denied based on that observation,” said advocate Sneha Mukherjee, who said techniques in USA allow medication to stop the foetal heartbeat and abort the baby without fearing a live birth.

In India, however, the medical termination procedure is different. “Normally, we give drugs to induce early labour and then eject the baby out. In this case, the viability of life presents an ethical dilemma,” said Dr Avinash Supe, dean at KEM hospital.

Supe said the chance of the baby’s survival is near zero in the 21st week of pregnancy, this rises to 60 per cent beyond 24 weeks and up to 80 per cent after 26 weeks.

The woman plans to write to the Chief Justice of India. “Who wants to kill their own child? It is the hardest decision I had to take. But what option do I have?”

“I have not slept, neither has he,” she points to her husband. The delivery is due in June. Doctors in her case predict the baby’s chances of survival to be negligible but how long can the baby survive after birth is difficult to guess.

“This is the system’s failure,” said Datar. “Poor patients like her are forced to visit the court for abortion because usually diagnosis in their case gets delayed,” he said.

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