Three months after Philadelphia physicians judged that his brain was irreversibly damaged in a fire, a New Jersey teenager has returned from a difficult trip to Guatemala to have a breathing tube inserted.
Areen Chakrabarti, who turned 15 this month, is now connected to a ventilator at Newark Beth Israel Medical Center, said his aunt, Tumpa Banerjee.
He went to Guatemala on a special medical-transport flight, accompanied by his mother, Rumpa Banerjee, after physicians at Children's Hospital of Philadelphia declined to perform the tracheostomy. The family sought to move the boy from CHOP to another facility, but none would admit him unless he first had a tube inserted.
Mother and son returned from Guatemala on July 11, and the family clings to hope that he may recover somewhat. But if physicians at CHOP were correct in their diagnosis of brain death, by clinical definition that means the boy will not recover — that he is already dead.
In New Jersey, however, lawmakers enacted a religious exemption that Areen's family says is applicable in his case. If a patient's faith dictates that life persists as long as the heart is beating, then brain death alone is not enough for a legal declaration of death. Areen's family subscribes to the Hindu faith.
On Saturday, the boy's feet moved "significantly," his aunt said.
But the next day he suffered a setback, bleeding profusely in his urine. Providers at Newark Beth Israel have declined to check the boy for signs of an infection, his aunt said.
"They are not checking his blood count or anything," Banerjee said. "They said there would be no escalation of care."
Representatives for the hospital declined to comment, citing patient privacy rules.
The boy and his mother spent more than two weeks in Guatemala. The cost of the medical transport and the procedure topped $100,000, the boy's aunt said. The family has borne some of the cost with donations through the GoFundMe site.
Areen suffered from severe smoke inhalation in an April 14 fire in his Bordentown home. Diagnosed on the autism spectrum, he ran into the burning home in the confusion.