For the second time in less than a month, a family has gone to court to challenge Children's Hospital of Philadelphia over its efforts to take a child off life support.
Anna and Jonathan Auyeung, the parents of Jayden Auyeung, filed for a temporary restraining order in Common Pleas Court on Wednesday, their child's 10th birthday. The Edison, N.J., boy, who suffers from a genetic motor neuron disease, couldn't breathe after a mucus plug developed in his throat while he was at home on May 4, his mother said. Despite efforts to revive him, he had to be 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.
CHOP declined to comment.
The family wants to take Jayden to a hospital or long-term-care facility in New Jersey, but has not found a facility to accept him, said Anna Auyeung.
In Pennsylvania and most states, a diagnosis of brain death is enough to declare someone legally dead, meaning he or she can be taken off life support. New Jersey lawmakers years ago enacted a religious exemption: If the family's faith dictates that a patient is alive so long as the cardiovascular system is functioning, then a physician cannot declare the person dead based on brain death alone.
The Auyeung case is similar to that of Areen Chakrabarti, 14, who has been on life support since arriving at CHOP on April 14. He suffered smoke inhalation and severe brain injury during a fire in the family's Bordentown home. The hospital sought to remove the boy from a ventilator and other life-sustaining treatment against his mother's wishes. The case is pending a decision by the court.
"This goes to show you that there needs to be policy changes in the state of Pennsylvania, not only with CHOP," said Christopher Bagnato, attorney in both cases.
"What we hope for is a change in death criteria, procedures, and protocol, because they must see that there are issues with the policies that are in place right now," said Bagnato.
Jayden suffers from spinal muscular atrophy, a genetic disease that affects the part of the nervous system that controls voluntary muscle movement. The severity of the condition, and the age at which it is evident, can vary widely.
A week after Jayden was admitted to CHOP, doctors asked the parents if they would agree to terminate the child's life support. The family was told that on Thursday a neurological test would be performed and that if tests confirm Jayden is "brain dead," the hospital would seek to remove life support without the parents' consent, according to court documents.
His mother does not accept that there is no hope of her son's recovering.
"When we touch him or talk to him, he moves his finger and moves his leg and moves his mouth," Anna Auyeung said, but she was told not to see these as positive signs. "Doctors said it was spinal reflex," she said.
The family is citing religious reasons in the court petition. Jayden and his father are Catholic, Anna Auyeung said, and she is Buddhist.
In December 2016, the U.S. Food and Drug Administration approved the use of nusinersen, known by the brand name Spinraza, for the treatment of SMA. The drug can slow, stop, or reverse symptoms, according to the Muscular Dystrophy Association.
"Gene therapy will be coming out soon," Auyeung said.
Jayden has been undergoing treatment at CHOP every four months for his genetic conditions and was improving so much, his mother said, that doctors told her he would have a "long, full life."
When Jayden was born, his family took him to one doctor after another. After he was diagnosed with SMA at 9 months, doctors said to "take him home and love him," his mother said. "I did the opposite," she said, explaining that she fought for her child then and will continue to do so.
"He is a bright little boy," she said. "The spinal muscular atrophy has nothing to do with his brain or intelligence."
Jayden goes to school, has lots of friends, plays music at his church, and speaks Chinese, she said.