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Little Jesse Koochin remains hooked up to a ventilator at Primary Children's Medical Center, oblivious to the controversy that has erupted around him.
Doctors at the Salt Lake City hospital pronounced the 6-year-old cancer patient brain-dead this week and want to remove life support. Jesse's parents, Steve and Gayle Koochin, insist their youngest child is alive and believe they can bring him back to health with alternative medicine.
Now, the decision of whether Jesse stays on life support lies with the courts after 3rd District Judge Sheila McCleve, on a motion by the Koochins' attorney, granted a temporary restraining order on Wednesday barring the hospital from taking the boy off of his ventilator. Doctors had planned to disconnect the machine at 4:30 p.m. Wednesday.
McCleve also ordered that Jesse be released to his parents' custody for further treatment and transport and that doctors give Jesse another electroencephalogram (EEG), a test to detect abnormalities in the electrical activity of the brain. The hospital offered to conduct one earlier in the week, but, after the Koochins initially declined, doctors refused their later requests for the test.
"We would like to care for Jesse in our home like any loving parents would," Gayle said. "It's not as if he's been in a coma for a year. I can't believe they can take this decision away from his parents. They would have to kill him for him to die."
Chris Maloney, Primary Children's associate medical director of medical services, said the hospital welcomes the court's decision and will care for Jesse until the court determines the case.
However, he and other hospital officials maintain the boy is dead and has begun decomposing.
"When it was determined he was brain-dead, there was no further care we could provide," Maloney said.
In Utah, there is no case law stipulating that doctors have to keep patients they believe are dead on life support, so McCleve's decision could set precedent.
The next hearing on the case is scheduled for Oct. 27. By that time, doctors said Jesse's heart should stop even with a ventilator.
His parents, on the other hand, see McCleve's action as a chance to rescue the boy, and are looking for a doctor to treat him with nontraditional medicine.
They brought him to Utah about a month ago to see an unnamed practitioner who specialized in holistic medicine. Jesse landed at Primary Children's on Sept. 15, when he had trouble breathing on his own.
Doctors determined that Jesse was brain-dead through separate examinations Monday and Tuesday by two physicians.
"We believe we can wake him up from the coma using vitamins, minerals, mineral baths" and other naturopathic treatments, Steve said. "They [Primary Children's] are sticklers about the rules, and won't let us provide the holistic care we want."
In Utah, the law says a person is legally dead if physicians have determined "irreversible cessation of all functions of the entire brain, including the brain stem."
State statutes provide guidance in cases where a patient has an advance medical directive or family members who want to remove their loved one from life support. But they do not specifically state what should happen when a family disagrees with a doctor's determination of death, said Salt Lake City attorney Keith Kelly, who specializes in health-care law and litigation.
There are no Utah appellate cases that have addressed the specific question, either, Kelly said.
"Most cases deal with just the opposite, where the doctors feel that there is some hope and families decide that they want to withdraw treatment," he said.
Jesse's parents feel just the opposite, clinging to faith when others accuse them of being in denial.
The boy's saga has been fraught with controversy. He was diagnosed with medulloblastoma brain cancer in April in Florida, where his family lived. The previously healthy child showed few symptoms aside from vomiting and headaches, but doctors found and removed a tangerine-size tumor.
After undergoing radiation, his parents opted to take the boy to a clinic that practices holistic therapy in Georgia, where he slipped into a coma and ended up in a Georgia hospital. His parents fought with doctors in Georgia and were threatened with potential neglect or abuse when they wanted to take him to Mexico for alternative treatment, they said. They later returned to Florida, where they said they got approval by a hospital to fly Jesse to a clinic in Tijuana, Mexico.
"The doctors here don't want to consider anything other than conventional medicine," Gayle said. "Those nurses and doctors [in Mexico] helped bring back Jesse from near death, and we have faith it can happen again."
Primary Children's doctors are skeptical, given that his brain tumor tripled in size during his stay there.
"I don't know what shape he was in before, but he is dead now," Maloney said.
Medulloblastoma of the brain is the most common brain tumor in children, occurring more frequently in boys than girls.
While cancer is rare in children, brain tumors are the third most common type of childhood cancer, after leukemia and lymphoma.
The tumors can spread along the spinal cord. Symptoms include loss of balance, headache, vomiting, unusual sleepiness, change in personality or behavior and unexplained weight loss or weight gain.
Treatment often involves a combination of surgery, radiation therapy and chemotherapy. About 30 percent to 50 percent of children are disease-free in 10 years.
Source: National Cancer Institute