A boy whose family went to court to challenge Children’s Hospital of Philadelphia over its efforts to take him off life support left Philadelphia Monday morning headed for Guatemala.
Areen Chakrabarti, 14, and his parents took off from Philadelphia International Airport before noon bound for a hospital in Guatemala City. He arrived safely and was admitted to Hospital Universitario Esperanza in Guatemala City, confirmed Christopher F. Bagnato, a lawyer for the family.
CHOP declined to comment for the story.
On April 14, physicians declared Areen brain dead after he suffered severe brain damage from smoke inhalation when the family’s Bordentown home caught fire. Areen, who is on the autism spectrum, became confused and ran upstairs rather than outside. He has been on a ventilator since the fire.
The family had been unable to find a hospital or care facility willing to take their son without a tracheostomy, a surgery that would create an air passage in the neck, but CHOP will not perform the procedure, according to Bagnato.
Areen will be treated by Edgar Lopez Alvarez, a physician at Hospital Universitario Esperanza, where he will receive a tracheostomy. Once the teen has recovered from the surgery, Areen will return to the United States and be placed in either a long-term facility or the family’s New Jersey home, Bagnato said.
“It’s been an incredible journey,” Bagnato said.
The family had to get all new identification documents, including passports and birth certificates that were lost in the fire. The family is paying $50,000 for the transfer; $30,000 for a flight provided by the Florida-based Medical Transport Services; and $20,000 for the Guatemalan hospital, Bagnato said.
Areen’s case had been tied up in courts for more than two months as the family fought legal attempts by CHOP to have their son removed from life support.
On June 18, Superior Court issued an order that could have made it possible to remove Areen from the life-extending technologies at 5 p.m. on June 20. But the family filed an emergency stay with the Supreme Court of Pennsylvania, and it was granted, Bagnato 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 that never happened, 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.
On May 4, Jayden, who suffered from a genetic motor neuron disease, couldn’t breathe after a mucus plug developed in his throat while he was at home. He was initially taken to Robert Wood Johnson Hospital in New Brunswick, N.J., where he was placed on life support. Two days later he was transferred to CHOP, which had treated him for years.
The family had hoped to move the boy from CHOP to a long-term care facility or even take him back home to Edison, N.J., but was not able to find another place for him.
Pennsylvania allows a physician to declare a patient legally dead if either heart or brain function has completely and irreversibly stopped. Lawmakers in New Jersey have enacted a religious exemption. If a patient’s faith dictates that life persists so long as the heart is beating, then brain death alone is not sufficient for a legal declaration of death.