Brain Dead Child Discharged to Home With Parents

KRVRN, BSN, RN · Oct 19, 2004

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.

Morguein · Oct 19, 2004

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 · Oct 19, 2004

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 · Oct 19, 2004

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 · Oct 19, 2004

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 · Oct 20, 2004

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 · Oct 20, 2004

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 · Oct 20, 2004

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.

stevierae · Oct 20, 2004

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!

Pediatric Critical Care Columnist · Oct 24, 2004

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 · Oct 28, 2004

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.