PHILADELPHIA _ The death certificate for 10-year-old Jayden Auyeung, whose family went to court last month to challenge Children's Hospital of Philadelphia over its efforts to take him off life support, lists the day he died as May 15, when physicians found that he was brain dead. Yet, his grieving family says, his heart did not stop beating until Saturday.
"They put down May 15 when they pronounced him brain dead, when it should be June 16, 2018," said Linda Pham, the boy's aunt. "That does not make sense to us."
The family had hoped to move the boy from CHOP to a long-term care facility or to even take him back home to New Jersey, but were not able to find another place for him.
The official cause of death was hypoxic ischemic encephalopathy, cardiopulmonary arrest and respiratory failure, the boy's aunt said.
"He fought until Saturday and then he could not do it anymore," said Pham, who lives in Edison, N.J.
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. Physicians there declared the boy brain dead and asked the family to remove all life support on May 16, the child's 10th birthday.
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.
Jayden's mother, Anna, is Buddhist and his father, Jonathan, is Catholic.
CHOP declined to comment, citing patient privacy laws.
Pham said that in the last few weeks Jayden had begun to move in response to his father's voice, though doctors told the family what they were seeing actually was involuntary movement.
A viewing will be held on Friday at St. Helena Roman Catholic Church, with the funeral on Saturday, Pham said.
Jayden's parents are taking it "day by day," she said.
Jayden's blood pressure had been falling for about five days before his heart gave out and there was blood in his stool. A neurologist the family brought in from out of state said he needed a blood transfusion and fluids but the hospital did not provide those for Jayden, Pham said.
The term brain death, by definition, means the patient will not recover, David Greer, chair of neurology at Boston University School of Medicine, told the Inquirer last month.
"If the diagnosis has been made correctly, there's never been any case that has been legitimized or validated that there's been any recovery of brain function," said Greer, also the chief of neurology at Boston Medical Center.
CHOP physicians have also declared Areen Chakrabarti, 14, brain dead after he suffered severe brain damage from smoke inhalation on April 14, 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.
Areen's case is still pending in the Orphans Court division of Common Pleas Court.
Long-term care facilities will not accept Areen without a tracheostomy, a surgery that would create an air passage in the neck, but CHOP will not perform it, according to Christopher F. Bagnato, lawyer for both families.
"Areen has lost 22 pounds in 21 days," said Rumpa Banerjee, the boy's mother. She, like Jayden's aunt, complained that CHOP hasn't done enough to actively treat her son.
Areen's family is attempting to find a facility abroad _ possibly Costa Rica, Italy or Guatemala _ that will take him and perform the tracheotomy, she said, though he would have to go by ship since he cannot fly.
All of the family's paperwork including passports and birth certificates were lost in the fire, so she is now getting new travel documents.
"I will try to deal with the impossible to keep him safe," she said. "God will help me, too."
