Suffering from rare birth defect in brain, Bangladeshi toddler gets fresh lease of life after surgery at AIIMS Delhi

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In a life-saving surgery, doctors at AIIMS Delhi managed to remove a giant encephalocele, a rare type of birth defect, from the head of a three-month-old child from Bangladesh.

The child, who also has a twin, was brought to Delhi by his father after doctors in Bangladesh said his chances of survival are bleak.

“I contacted many doctors at various private hospitals in Delhi too, but all of them denied treatment and said there is no hope for the child to survive. I also checked in other countries including Thailand but the treatment cost was very high there,” said the father Abid Azad, a communication specialist at USAid in Bangladesh.

His wife, Sadia Yeasmin, meanwhile, is back in Bangladesh taking care of the other twin and a six-year-old son. “I could not bring my wife as she has to stay with our two other kids. It was a very challenging task for me to bring my three-month-old baby to Delhi on my own, but it was about his life and death,” said Azad.

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The surgery was conducted by a team of doctors headed by Dr Deepak Gupta, professor of neurosurgery at AIIMS Delhi, on December 12.

Dr Gupta said that encephalocele could be fatal if not operated and it can rupture and cause meningitis leading to loss of life as well. “While the mother is nursing one twin child in Bangladesh, the father is nursing the second twin child here. The child is on formula feed for now. They are brave parents managing their twin children across two nations,” Dr Gupta added.

According to Dr Gupta, Encephaloceles are a rare type of birth defect of the neural tube that affect the brain. It is associated with skull defects characterised by partial lacking of bone fusion, leaving a gap through which a portion of the brain sticks out (protrudes).

“We noted that there was cerebrospinal fluid leaking from sac and a history of pus discharge from the sac which was observed by the father. There was also large swelling at back, which was causing difficulty in positioning of baby, difficulty in feeding child, nursing, fear of sudden rupture of swelling containing brain tissue,” Dr Gupta said.

The surgery was done under the Universal Health Coverage Day, an initiative of the United Nations and WHO to make healthcare accessible to all.

Dr Gupta said that in this case, the parents didn’t take any Folic acid tablets and it is a well-known fact that Folic acid tablets must be taken when someone is planning pregnancy (periconceptional period) to prevent foetal neural tube defects.

He added that women becoming pregnant should consume 400 micrograms of Folic acid/day from fortified foods or supplements or both, in addition to that obtained through a normal diet.

Abid said that six days after surgery, the baby is doing well and is likely to be discharged on Monday. “All doctors told me that skull reconstruction cannot be done but today my child is safe and healthy post the surgery. We will stay in Delhi for another week till the time his stitches are removed but if another surgery is required, we might stay for a few more,” he added.



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