Father Wishes Death but Mother Hopes Her Ailing Baby Is Cured

“I want my child to die. I cannot see him living in pain anymore. The Almighty must listen to our prayers and take him away,” says Jhontu Das, after having lost all hopes of his son’s survival.

Jhontu feels that death would, at least, bring closure to the pain and unwanted attention his son Babu has been subjected to right after his birth.

The 30-year-old was expecting his first child and was bubbling with joy. All that changed when he first glanced at his new born.

Born With a Terminal Disease

Babu was born with meningoencephalocele, a rare disease characterised with an abnormal sac of fluid, brain tissue, and meninges (membranes that cover the brain and spinal cord) that extends through a defect in the skull.  Doctors say that he cannot survive more than a few days.

Babu was born at Calcutta National Medical College (CNMC) at 3:56 pm on 31 August.

I became unconscious on seeing my child for the first time. I regained my senses after 30 minutes. The medics told me that he was born with a very rare ailment and might not survive beyond a few days. I was shattered.

Jhontu Das, Father

The child is present with a huge mass on the head. The disease is rare. The mortality rate is very high in such cases. The disease is normally caused by the folic acid deficiency in the mother. The baby can be aborted within 20 weeks.

Dr Mehboob Alam, CNMC

The baby remained admitted in the hospital for more than a month and Jhontu didn’t allow his wife to see the child for 24 days fearing that she might suffer a cardiac arrest:

I lied to her that our son was suffering from an ailment and was kept in different wards for treatment. I showed her only after 24 days when doctors decided to take him to the Bangur Institute of Neurosciences (BIN) for a second opinion on surgery.

Docs Say Chances of Survival Almost Nil, Mother Hopes for A Miracle

The couple lost all hope when surgeons at BIN, one of the premier neurological institutes in eastern India, declined to operate describing the disease as very rare in nature whose surgery might lead to instant death.

Babu’s mother Jyotsna who is inconsolable on seeing the condition of her son says, that she had numerous ultrasounds done during pregnancy that revealed nothing serious.

“We were quite cautious for our first child and had taken all precautionary measures. Despite my husband’s meagre income, we took all initiatives to ensure that the baby is healthy. During ultrasounds, doctors had suspected that something was wrong but they assured us that nothing was serious and things would be taken care of during delivery,” the mother said.

“But after his birth, medics are trying hard to explain that the child is abnormal and cannot survive. It is very difficult for a mother to see her child writhing in pain,” she said, while sobbing inconsolably.

The couple says, that they have accepted the fact that the life of their child is short-lived but are still ready to have him operated though doctors have already said that chances of survival are almost nil.

We cannot see him in this condition. He cannot even turn his head and is being fed through a tube. As a mother, I cannot feed and cuddle him. We have no problem to have him operated. He might survive. Miracles do happen.

Jyotsna Das, Mother

Docs Refuse to Perform Surgery, Parents Adamant

But doctors at CNMC made it clear that they are not willing to take the risk.

Dr Pit Baran Chakraborty the Medical Superintendent-Cum- Principal (MSVP) of CNMC said:

The child might die in the Operation Theater (OT) because he is suffering from a very rare ailment which normally happens in one child out of one lakh born. It normally happens when neural tube does not close completely during pregnancy. The major part of the brain is out of a skull box. There are just 0.1 percent chances of his survival.

The couple has brought the child home at Palli Chanditala at Rajpur Sonarpur in South 24 parganas to spend a few days with him, “We don’t know what would be his fate but at least we can play our part by giving service to him as long as he is alive.”

After being denied surgery from the medics, the couple is now planning to move to the Chief Minister with their plea and said:

We are ready to sign any bond stating that the risk would be ours. We cannot see him in this condition. I would try to meet the senior health officials or the Chief Minister to allow his surgery and the rest is our fate. He might survive or die, but at least, he would be relieved of his sufferings.

Producer: Hera Khan
Video Editor: Sandeep Suman

(The writer is a Kolkata-based freelance journalist.)