Jesse Koochin, the 6-year-old boy whose medical condition was the subject of controversy last month, was pronounced dead early Friday morning after his heart stopped beating.
His father, Steve Koochin, said the family would be taking the little boy's remains to be buried in Steve Koochin's hometown in Canada.
Right now, he said, the family's consumed with grief. "We're just overwhelmed," Steve Koochin said.
Just a month ago, the family succeeded in getting a court order to prevent Primary Children's Medical Center from declaring the boy brain dead and removing his life support. Third District Judge Sheila McCleve issued a temporary restraining order giving control of his medical care to Steve Koochin and his wife, Gayle, and preventing the hospital from turning off the respirator.
The Koochins had him removed from the hospital, still on life support, and taken to their home where they've cared for him for the past month with some help from a hospice agency.
The court order was dissolved and the case closed after the two sides agreed that Primary Children's Medical Center was no longer involved in the boy's care.
Friday, St. Mark's Hospital issued a statement confirming the boy had been brought there by ambulance about 1 a.m. Attempts to resuscitate him failed, and he was declared dead at 1:28 a.m.
Stacey Schmidt, an attorney for the Koochin family, told reporters at a press conference late Friday afternoon that the Koochins wanted to thank people in the Salt Lake area and the nation for their support and prayers.
"The Koochins value every moment they have had to spend with Jesse and value the peace they have been able to find in this additional month of life extended to him," Schmidt said. "They are grateful that they have had the chance to make decisions concerning Jesse within their family."
Schmidt said the parents set up a bed for Jesse in their living room and one or the other has been with the boy at all times. The extra time they had with Jesse permitted extended family members to travel to Utah to say goodbye in a setting that was comforting and dignified, Schmidt said.
The little boy was diagnosed with an aggressive form of brain cancer in April. He underwent a variety of treatments, was at one point declared comatose and then seemed to rally after his parents took him to Mexico for treatment.
In September, they brought him to Salt Lake City for treatment with alternative medicine, but that practitioner said the boy was too ill and sent the family to Primary Children's Medical Center. He was admitted, and his condition continued to deteriorate. In mid-October, doctors at Primary said that his tumor had grown so large it broke through the base of his neck, cutting off blood to his brain and effectively killing him.
Two doctors in separate protocols determined that Jesse met the criteria for brain death, but the Koochins continued to hope for a miracle.
His family called local news media outlets to get publicity to prevent the hospital from removing life support, while hiring lawyers to seek the restraining order.
When asked on Friday about any further legal action regarding Primary Children's Medical Center, Schmidt said she could not discuss it now but added, "Our clients have talked to us about it."
Schmidt said she didn't think this was a tug of war determining who was right or wrong but rather a chance for a family to give medical care to a child in the way they thought was appropriate and, in the end, say goodbye in a manner that gave some closure and peace of mind.