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 even take him back home to New Jersey, but was 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, of 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 was involuntary movement.
A viewing will be held on Friday at St. Helena Roman Catholic Church in Edison, 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.
Arthur Caplan, a New York University bioethicist, said CHOP's decision on the death certificate is understandable.
"There is judgment involved, however for legal reasons when a hospital believed the person is dead, that is the date that goes on the certificate," Caplan said. There can be some discretion such as when a family is on the way to say goodbye, but that is usually a matter of hours, not weeks. It can sometimes be psychologically easier for a family to see a loved one in the hospital rather than the morgue, and doctors and nurses are sensitive to that, he said.
"Brain death is death," he said. "Even though there can be fights once death has occurred, it does not change the fact doctors believe the person to be dead."
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 court.
On Monday the Superior Court issued an order that could have made it possible to remove Areen from the life-extending technologies at 5 p.m. on Wednesday. But the family filed an emergency stay with the Supreme Court of Pennsylvania, and it was granted on Tuesday afternoon, said Christopher F. Bagnato, lawyer for both families.
"The fight goes on," he said. "I don't know how long. I tell the family, you take it one day at a time."
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 Bagnato.
"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 getting new travel documents.