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Brain Dead Child Discharged to Home With Parents

Posted

Specializes in Medical/Surgical/Maternal and Child.

Brain-dead son can move feet, dad says

By Jason Bergreen

The Salt Lake Tribune

Six-year-old cancer patient Jesse Koochin's condition is "dire" at best, his father acknowledged Sunday, but the boy doctors pronounced brain-dead last week now can move his feet.

"That was a new thing that occurred just last night," Steve Koochin told reporters at a Sunday afternoon news conference at Olympus Hills Park near Holladay. "I was elated."

Holding up two photos taken of Jesse smiling when he was an infant, Koochin appeared optimistic about his son's chances of surviving.

"That's my son right there," he said, pointing to the pictures. "That's his spirit."

Gayle Koochin, Jesse's mother, reported the same movement by her son when she rubbed his foot Saturday. She also said his cheeks were pink and he was warm to the touch.

"We have to have faith in Jesse," she said. "There are many who don't. It's up to him."

A judge granted a restraining order last week barring doctors at Primary Children's Medical Center in Salt Lake City from removing Jesse from life support and allowing his parents to take him home to their Salt Lake apartment. He remains hooked up to a ventilator to help him breathe, his father said, and his diet consists of vitamins and organic juices. Full-time nurses are caring for Jesse at night and part-time during the day.

On Sunday, Jesse's blood pressure was 90 over 57 and his pulse was 108 beats per minute, his father said.

"You can put your finger on his temple and feel every heartbeat," he said.

Jesse's medulloblastoma brain cancer was diagnosed April 19, four days after his 6th birthday. Doctors found a tangerine-size tumor. Jesse underwent radiation and

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holistic therapy in Florida and Georgia as well as alternative treatments in Mexico. He was hospitalized in Utah on Sept. 15 when he had trouble breathing on his own.

Doctors determined through separate examinations by two physicians last week that Jesse was brain-dead - a conclusion his parents reject.

"He is not his brain," Steve Koochin said Sunday. "There is nobody that is just his brain."

When asked if he planned legal action against the hospital, Koochin only said, "Our focus is on Jesse."

He said the community's response to the boy's struggle has been overwhelming and that the family appreciated the support. Over the weekend, an LDS Church member visited the Koochin home and blessed Jesse. He said strangers have approached Gayle in public to hug her.

The Koochins, uncertain about their next move, hope to know more about their son's fate by the end of the week.

"Either he's going to start improving on a day-to-day basis or he's going to start deteriorating on a day-to-day basis," Koochin said.

jbergreen@sltrib.com

KRVRN, BSN, RN

Specializes in NICU.

Well, I would think that if their son has a chance of recovery they would want him in the hospital where he can have close monitoring and such. And, even with brain death, some spinal reflexes can be present right? Maybe that's what they're seeing with his feet.

From what I understand about brain death; once you're brain dead, you're dead. There is no circulation in the brain. I'm not sure why his feet move when stimulated. It may be possible that a dead person could still have automatic reflexes; but not sure about that. I mean, unless this boy really isn't brain dead. I Know you can keep a dead body functioning to an extent by keeping it on life support. I can't imagine how it has lasted so long though. Normally, the blood pressure would have started to crash, electrolytes out of balance and needing lots of replacements, etc... But this boy is still "alive" if you can call it that. Amazing. Unless....he really isn't brain dead...

chris_at_lucas_RN, RN

Has 7 years experience.

I feel badly for the family, because it's clear they are in some serious denial, but who wouldn't be?

On the other hand, kudos to those parents for taking their child home. Whatever happens, spontaneous remission (so unlikely) or slipping into the beyond, his parents have control of him, not the staff of a hospital.

Without medical support, he will no doubt make his last journey (of this life, anyway) a little quicker.

But they'll do it together, and without medical intrusion.

I say, kudos, and God's Speed.

talaxandra

Specializes in Medical.

There's at least one case in the literature of a brain dead child who has 'survived' at home for fourteen years and counting. He didn't have cancer, but it's interesting...

Gompers, BSN, RN

Specializes in NICU.

I thought that someone can be declared brain dead and yet still have at least part of their brain stem functioning? That would explain involuntary movements and reflexes. But I may very well be wrong!

Euskadi1946

Specializes in Medical/Surgical/Maternal and Child.

I thought that someone can be declared brain dead and yet still have at least part of their brain stem functioning? That would explain involuntary movements and reflexes. But I may very well be wrong!

According to the drs who diagnosed the little boy as brain dead they stated that his body was already beginning to decompose. 3 doctors diagnosed him brain dead, but who knows??? Where there is the slightest spark of life there is hope.

chris_at_lucas_RN, RN

Has 7 years experience.

According to the drs who diagnosed the little boy as brain dead they stated that his body was already beginning to decompose. 3 doctors diagnosed him brain dead, but who knows??? Where there is the slightest spark of life there is hope.
Okay, decomposition means plain old vanilla "dead," not "brain dead."

I think Lazarus and, depending on your interpretation, J. C. himself were the only two to pull of that miracle.

I also doubt that it is legal for the parents to keep their decomposing child's body, no matter what their believe in miracles. There are rules about the management of decomposing humans, and it related to public health.

Perhaps there is some confusion as to the meaning of "decompensation" versus "decomposition."

Euskadi1946

Specializes in Medical/Surgical/Maternal and Child.

Okay, decomposition means plain old vanilla "dead," not "brain dead."

I think Lazarus and, depending on your interpretation, J. C. himself were the only two to pull of that miracle.

I also doubt that it is legal for the parents to keep their decomposing child's body, no matter what their believe in miracles. There are rules about the management of decomposing humans, and it related to public health.

Perhaps there is some confusion as to the meaning of "decompensation" versus "decomposition."

I know that decomposition means dead. I just went by the article in the newspaper. The little boy is on a vent so naturally his heart is still beating. They are giving updates on the little boy in the news so if you want more information try http://www.slctribune.com. But the drs said that his body was starting to decompose, unless I'm mistaken and I very well may be.

Okay, decomposition means plain old vanilla "dead," not "brain dead."

I think Lazarus and, depending on your interpretation, J. C. himself were the only two to pull of that miracle.

I also doubt that it is legal for the parents to keep their decomposing child's body, no matter what their believe in miracles. There are rules about the management of decomposing humans, and it related to public health.

Perhaps there is some confusion as to the meaning of "decompensation" versus "decomposition."

Sounds like he's dead to me. Soon his brain will start to liquefy as atrophy sets in and the brain matter itself is replaced by CSF. They'll see liquid oozing out his ears as this occurs. His heart will stop soon; immediately, I suspect, if they disconnect the ventilator. The only thing keeping his cheeks pink is the ventilator perfusing his (decomposing) organs.

Didn't we already have this discussion under neuro nursing? Lack of cortical function, regardless of brainstem function, can be used in some facilities to declare a patient brain dead, and brain dead means DEAD. Period. I suspect his feet "movement" is decorticate or decerebrate posturing.

This is really sad. I, too, think these poor parents are in some serious denial. However, I am unclear as to why the nurses working in the home or hospice aren't helping them face facts and accept what seems to have occurred--death--rather then givng them false hopes. Well, miracles have been known to occur, but not with decomposing bodies--as chris said, not since biblical times, with Lazarus and Jesus Christ Himself!

NotReady4PrimeTime, RN

Specializes in NICU, PICU, PCVICU and peds oncology. Has 25 years experience.

Brain death criteria are pretty specific and comprehensive. In order for a person to be declared brain dead, at least two physicians must assess for the criteria on separate occasions at least six hours apart. I've listed the criteria used in North America below.

Unresponsiveness

-The patient is completely unresponsive to external visual, auditory, and tactile stimuli and is incapable of communication in any manner.

-Absence of cerebral and brain stem function

-Pupillary responses are absent, and eye movements cannot be elicited by the vestibulo-ocular reflex or by irrigating the ears with cold water.

-The corneal and gag reflex are absent, and there is no facial or tongue movement.

-The limbs are flaccid, and there is no movement, although primitive withdrawal movements in response to local painful stimuli, mediated at a spinal cord level, can occur.

Apnea Test: An apnea test should be performed to ascertain that no respirations occur at a PCO2 level of at least 60 mmHg. The patient oxygenation should be maintained with giving 100% oxygen by a cannula inserted into endotracheal tube as the PCO2 rises. The inability to develop respiration is consistent with medullary failure.

Nature of coma must be know

-Known structural disease or irreversible systemic metabolic cause that can explain the clinical picture.

-Some causes must be ruled out:

-Body temperature must be above 32 C to rule out hypothermia

-No chance of drug intoxication or neuromuscular blockade

-Patient is not in shock

Persistence of brain dysfunction

-Examination to be repeated at:

-Six hours with a confirmatory isoelectric EEG or electrocerebral silence, performed according to the technical standards of the American Electro-encephalographic Society Criteria

-Twelve hours without a confirmatory EEG

-Twenty-four hours for anoxic brain injury without a confirmatory isoeletric EEG

Confirmatory tests (are not necessary to diagnose brain death)

-EEG with no physiologic brain activity

-No cerebral circulation present on angiographic examination( is the principal legal sign in many European countries)

-Brain stem-evoked responses with absent function in vital brain stem structures

As you can see, there isn't a lot of room for interpretation here. If three physicians have done brain death criteria assessments and have found that the child meets them, well, then the child is dead.

Euskadi1946

Specializes in Medical/Surgical/Maternal and Child.

Here is the latest news on Jesse Koochin

No death certificate for Jesse

Primary Children's says the boy is brain-dead, but will leave the final decision to his parents

By Elizabeth Neff

The Salt Lake Tribune

Doctors say 6-year-old brain cancer patient Jesse Koochin is legally dead, but Primary Children's Medical Center on Wednesday agreed not to file a death certificate for the boy.

The promise ended a court battle that began Oct. 13, the day hospital physicians told Steven and Gayle Koochin of Florida they would remove the brain-dead child from life support.

The couple, who came to Utah seeking alternative treatments for Jesse, obtained a restraining order that day preventing the hospital from pulling the plug. The Koochins took their son home to a Salt Lake City area apartment two days later, where they continue to care for him with the help of nurses.

After a court hearing Wednesday, Steven Koochin said his son - who remains on a ventilator - is reacting to cold and to touch with limb and eye movement.

"Right now, Jesse is still as he was when he left Primary Children's - on the fence," said his father. "It will take a miracle, and that's what we are praying for."

While the Koochins' court case has ended, the difficult question of what should be done when parents disagree with a doctor's determination of death remains. There are no laws saying doctors have to keep patients they believe are dead on life support.

In a statement issued Wednesday, Primary Children's says it has no intention of caring for brain-dead patients meeting Utah's legal definition of death in the future.

"It is understandable that the death of a child is difficult for parents," the statement said. "Nevertheless, our staff cannot continue to provide treatment for patients who have met the condition of brain death because it is unethical to do so. In fact, if a hospital tried to bill a payer for such services, it could be considered medical fraud."

The statement said any medical study that proposed keeping a person on a ventilator for an undetermined period of time after brain death would be rejected as unethical by every institution in the country.

"Primary Children's Medical Center is dedicated to providing the best medical care to all children of our service area in an atmosphere of love and concern," the statement said. "However, even the best treatment cannot save every

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child, and we grieve with parents when that is the case."

The Koochins are still hoping alternative medicine can help their son. Steven Koochin said his son's blood pressure is 111/88 - considered fairly normal for a 6-year-old - and that his heart is beating strongly at 79 beats per minute.

"He's fighting for his life," Steven Koochin said.

The family is giving Jesse a strict - and expensive - diet of juiced fruits and organic foods. Medicaid is paying for some equipment costs, but other bills are mounting and the family has spent well over $80,000 so far for the boy's care, Steven Koochin said.

Gayle Koochin did not attend Wednesday's court hearing, but her older sister, Donna Lisa Wray, did. Wray said she came to Utah from Florida to see her nephew after reading what she termed gruesome reports from doctors that Jesse's body was decomposing.

That is not the case, Wray said, pointing to a picture she took of Jesse Wednesday morning. "He's there, he's alive, he responds to people who love him," she said.

Wray said she will stay with her sister to help with Jesse's care. "If his heart stops beating," Wray said, "then that's God's choice, not a doctor's."

Steven Koochin said any donations to help Jesse may be made through the Florida chapter of the B.A.S.E. Camp Candlelighters Children's Cancer Foundation.

Ninety percent of any donation will help Jesse, while 10 percent will go to the group, he said.

Donations can be sent to the Jesse Koochin Cancer Fund, 7501 Glenmoor Lane, Winter Park, FL 32792.

Euskadi1946

Specializes in Medical/Surgical/Maternal and Child.

Here is the latest news on Jesse Koochin

No death certificate for Jesse

Primary Children's says the boy is brain-dead, but will leave the final decision to his parents

By Elizabeth Neff

The Salt Lake Tribune

Doctors say 6-year-old brain cancer patient Jesse Koochin is legally dead, but Primary Children's Medical Center on Wednesday agreed not to file a death certificate for the boy.

The promise ended a court battle that began Oct. 13, the day hospital physicians told Steven and Gayle Koochin of Florida they would remove the brain-dead child from life support.

The couple, who came to Utah seeking alternative treatments for Jesse, obtained a restraining order that day preventing the hospital from pulling the plug. The Koochins took their son home to a Salt Lake City area apartment two days later, where they continue to care for him with the help of nurses.

After a court hearing Wednesday, Steven Koochin said his son - who remains on a ventilator - is reacting to cold and to touch with limb and eye movement.

"Right now, Jesse is still as he was when he left Primary Children's - on the fence," said his father. "It will take a miracle, and that's what we are praying for."

While the Koochins' court case has ended, the difficult question of what should be done when parents disagree with a doctor's determination of death remains. There are no laws saying doctors have to keep patients they believe are dead on life support.

In a statement issued Wednesday, Primary Children's says it has no intention of caring for brain-dead patients meeting Utah's legal definition of death in the future.

"It is understandable that the death of a child is difficult for parents," the statement said. "Nevertheless, our staff cannot continue to provide treatment for patients who have met the condition of brain death because it is unethical to do so. In fact, if a hospital tried to bill a payer for such services, it could be considered medical fraud."

The statement said any medical study that proposed keeping a person on a ventilator for an undetermined period of time after brain death would be rejected as unethical by every institution in the country.

"Primary Children's Medical Center is dedicated to providing the best medical care to all children of our service area in an atmosphere of love and concern," the statement said. "However, even the best treatment cannot save every

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child, and we grieve with parents when that is the case."

The Koochins are still hoping alternative medicine can help their son. Steven Koochin said his son's blood pressure is 111/88 - considered fairly normal for a 6-year-old - and that his heart is beating strongly at 79 beats per minute.

"He's fighting for his life," Steven Koochin said.

The family is giving Jesse a strict - and expensive - diet of juiced fruits and organic foods. Medicaid is paying for some equipment costs, but other bills are mounting and the family has spent well over $80,000 so far for the boy's care, Steven Koochin said.

Gayle Koochin did not attend Wednesday's court hearing, but her older sister, Donna Lisa Wray, did. Wray said she came to Utah from Florida to see her nephew after reading what she termed gruesome reports from doctors that Jesse's body was decomposing.

That is not the case, Wray said, pointing to a picture she took of Jesse Wednesday morning. "He's there, he's alive, he responds to people who love him," she said.

Wray said she will stay with her sister to help with Jesse's care. "If his heart stops beating," Wray said, "then that's God's choice, not a doctor's."

Steven Koochin said any donations to help Jesse may be made through the Florida chapter of the B.A.S.E. Camp Candlelighters Children's Cancer Foundation.

Ninety percent of any donation will help Jesse, while 10 percent will go to the group, he said.

Donations can be sent to the Jesse Koochin Cancer Fund, 7501 Glenmoor Lane, Winter Park, FL 32792.

chris_at_lucas_RN, RN

Has 7 years experience.

I guess he's not decomposing then, as was stated in an earlier post.

I see nothing wrong with a child like that being cared for at home. Who said the best place for sick people was a hospital anyway?

Certainly if that's the most appropriate care to be had, sure, put 'em in a hospital. But this kid is (you should pardon the expression) circling. If his parents want him home, by golly, that's where he should be.

Much cheaper to the family, the insurance company (not your problem unless it's your insurance company too, and then watch those premiums skyrocket!), and better for the kid.

I say go for it. (But not if he's decomposing..... :imbar )

talaxandra

Specializes in Medical.

The references earlier to decomposition concerned me, as tissue integrity is not brain-mediated.

It is cases like this that make the concept of bain death ambiguous, if not actually questionable - not just as a biological definition, but also legally. If brain death is legally and medically equivalent to somatic death, how can a hospital say "according to us he's dead, but we leave the finally decision [about whether or not he's dead] to his parents"?

mamajapko

Specializes in Psych, Cardiac, School Nursing. Has 2 years experience.

6-year-old brain-dead boy dies

Debbie Hummel THE ASSOCIATED PRESS

SALT LAKE CITY -- A 6-year-old brain-dead boy whose parents fought to remove him from hospital care, hoping that alternative treatment would cure him, died Friday.

Jesse Koochin, of Clearwater, Fla., was declared brain-dead by doctors but was ordered kept on life support by a judge after the parents insisted he could recover.

He was brought to St. Mark's Hospital in Salt Lake City by ambulance just after 1 a.m., according to hospital spokeswoman Deb Reiner. Doctors were unable to resuscitate him and he died at 1:30 a.m., Reiner said.

The hospital said the family requested privacy.

The boy had been in a coma after suffering complications from brain cancer. Doctors at Primary Children's Medical Center said he was dead, but his parents maintained that he still was alive and capable of recovery. After winning a restraining order Oct. 13 that kept Jesse on life support, Steve and Gayle Koochin took him home two days later.

Jesse had been hospitalized in three states and in Mexico, as his family went to great lengths to treat his cancer.

His father maintained that Jesse had previously fallen into a coma and was given about a week to live, but then responded to treatment in Mexico. He believed the same would be true in Utah, and after the boy had been released to the family Steve Koochin gleefully reported every twitch and response to touch his son made.

Meanwhile, the family with the help of a Hospice worker, tried to nurse Jesse back to health with alternative medicine and fed him organic juices intravenously.

The Koochins came to Utah to see a local doctor who could provide alternative treatment designed to rehabilitate his immune system. The boy was so ill, however, the doctor sent the family immediately to the emergency room at Primary Children's, where he was diagnosed with incurable brain cancer.

The size of his tumor more than tripled in the few days he spent at the hospital and his brain stem was eventually pushed down through the base of his skull. Two separate doctors, following rigorous protocols, declared the boy brain dead.

Dr. Chris Maloney, Primary's associate medical director for medical services, said Jesse's brain had even begun to decompose and that would eventually lead to cardiac death.

Primary Children's declined to comment on the boy's passing, except to say, "the staff here would express their deepest sympathy to the family," said spokeswoman Bonnie Midget.

A call to the family's attorney in Salt Lake City was not immediately returned.

In Utah, there is no case law regarding whether doctors have to keep patients they believe are dead on life support. The law says a person is dead if physicians have determined "irreversible cessation of all functions of the entire brain, including the brain stem."

Statutes provide guidance in cases where a patient has an advance medical directive or family members want to remove their loved one from life support. But they do not state what should happen when a family disagrees with a doctor's determination of death.

On the Net:

http://www.jessekoochin.com

This story appeared in The Daily Herald of Utah County on page D3.

Hellllllo Nurse, BSN, RN

Has 15 years experience.

Well, I hope people don't start shooting up orange juice after reading this line from the article:

"fed him organic juices intravenously."

Anyway, as it was stated, denial is a pwerful thing.

That family really loved that little boy. How very, very sad.

gwenith, BSN, RN

Specializes in ICU.

I think that the saddest part was the inability of anyone to be able to help those poor parents cope with their greif.

Yes we can clearly now see where the decomposition part came in but I do remember reading reports from the early days of mechanical ventilation prior to our international standard of brain death criteria. The report talked of two things 1) sudden and irreversible asystolic cardiac arrest happening within 3 days to 3 weeks after the pronouncement of death and 2) continuing decomposition of the body. The report talked of the patients "rotting away" on the end of the ventilator - that was enough for me - I have a vivid imagination.

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