The New Jersey teen who traveled to Guatemala for treatment after physicians at Children's Hospital of Philadelphia declared his brain irreversibly damaged in an April fire has died.
Ari Chakrabarti said his 15-year-old son Areen's heart stopped beating on Tuesday at the New Jersey hospital that took him in after the family returned from Guatemala.
"He was a jolly kid," Chakrabarti said. Areen loved to play and was always running around, he said. "He was big into computers."
On April 14, Areen, who was diagnosed on the autism spectrum, suffered from severe smoke inhalation after he became confused during a house fire and ran back into his family's Bordentown home to fetch his beloved video games. He had been on a ventilator since the blaze.
Citing ethical concerns, CHOP doctors declined to perform the tracheostomy that would have allowed the family to transfer Areen to a New Jersey hospital or long-term care facility.
The family wanted to move Areen to New Jersey because of the state's religious exemption that declares brain death alone is not enough for a legal declaration of death if a patient's faith dictates that life persists as long as the heart is beating. Areen's family are Hindi.
In late June the teen and his family traveled to Hospital Universitario Esperanza in Guatemala City on a medical transport flight so he could have the surgery to insert a breathing tube. They returned July 11 to Newark Beth Israel Medical Center, his aunt, Tumpa Banerjee, said at the time.
The family hoped to be able to move Areen from the Newark hospital to an apartment in Somerset County but Areen 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 father said.
The family went to court to fight for further treatment, Chakrabarti said. Though doctors have said there was no hope that Areen would ever recover, his family insists they saw signs of improvement; he was moving his legs, arms and hands when family talked to him or after the music from his favorite video games were played, his father said.
On Monday night the hospital stopped administering medications, Chakrabarti said.
In a similar case, CHOP physicians also declared 10-year-old Jayden Auyeung brain dead and asked the family to remove all life support on May 16, the child's 10th birthday. Though the family fought to keep him on life support, Jayden's heart stopped beating on June 16. The official cause of death was hypoxic ischemic encephalopathy, cardiopulmonary arrest, and respiratory failure, the family said. The boy suffered from a genetic motor neuron disease and wasn't able to breathe after a mucus plug developed in his throat while he was at home.
