Family wants to keep life support for girl brain dead after tonsil surgery #1

[Trino]

Even before talk of Byrne, I had a feeling the mother would never concent to organ donations.

Maybe I'm getting ahead of the story a bit, but what impact is this going to have on JaHi if Byrne aids the family? It has been mentioned that insurance isn't going to cover her. Now what? Will the courts mandate coverage? Will the hospital insist JaHi go elsewhere? How would she ever go home - seems she would need 'round the clock care. The grandmother is a nurse, but does the mother work?

A ton of questions...

 

[Elley Mae]

http://www.christorchaos.com/Dr.PaulByrnesRefutation_000.html

Dr. Paul Byrne has taken a great amount of time in the past week to refute the grave errors and false assertions that Bishop Pivarunas and the clergy of the Congregation of Mary Immaculate Queen make concerning the medical industry's manufactured myth of "brain death."

 

[SophieRose]

http://www.insidebayarea.com/news/ci_24787953/jahi-mcmath-neurologist-present-test-results-at-closed

The family also wants to bring in a second expert: Dr. Paul A. Byrne, neonatologist, pediatrician and clinical professor of pediatrics at the University of Toledo's College of Medicine, who has clashed with other physicians over the diagnosis of "brain-dead." Byrne, a devout Catholic, has said that brain death is not true death, a belief that contrasts with the majority of the medical establishment.

Children's Hospital Oakland filed a petition to have the restraining order lifted if Fisher concludes that Jahi is brain-dead, and is opposing the appointment of Byrne, whom the hospital said "is neither a neurologist nor a California physician, is not qualified, and has already taken a position on this matter."

 

[K_Z]

I really hope that the court will not allow Dr. Byrne to participate in the legal review of jahi's condition.

There are dozens of highly qualified neurologists in California that are far more impartial than Dr. Byrne, who has a very aggressive agenda. The family can fly him out if they wish, to examine Jahi, but I don't think the court should recognize his opinion medically for a number of reasons.

If they convene an ethics panel to discuss Jahi, I would be fine with Dr. Byrne being one voice on that panel, but I don't believe his medical qualifications are appropriate or relevant in the examination and prognosis of Jahi. After reading a bunch of his writings, I really can't view him as a medical professional, but more as a spiritual advocate or religious advisor. His agenda is well cemented, and he has said probably thousands, or millions, of times he does not believe in brain death, so I don't think his religious opinions are relevant in a medical exam. JMO. And thus far, this case has had nothing to do with organ donation as a motivation to "rush" to pronounce Jahi brain dead.

I think the line between advocacy and exploitation is getting thinner in this very sad case, and Dr. Byrne's insertion would serve to tip the situation into one of exploitation. JMO.

 

[K_Z]

http://www.christorchaos.com/Dr.PaulByrnesRefutation_000.html

Dr. Paul Byrne has taken a great amount of time in the past week to refute the grave errors and false assertions that Bishop Pivarunas and the clergy of the Congregation of Mary Immaculate Queen make concerning the medical industry's manufactured myth of "brain death."

Just want to point out that this was written in 2011. "Last week" was a quote from the article. Quite an interesting read.

 

[BeginnersLuck]

If I found myself in this situation, I would most likely want more than one opinion and every test run to confirm that my loved one was "brain dead".

I find Dr. Byrne's tactics, troubling. He is using his credentials to further an agenda. He is omitting important facts, that mislead the public. He has had this agenda for many years and he either seems to be outdated in his lectures or he purposely is still preaching the same material because it has worked for him in the past.

The way he tries to mix religion into science does not work for me at all.

He seems to refer to those that are not truly brain dead, when he gives examples of those that showed signs of life or recovered, but he uses the term brain death. He refers to the sleep apnea test, but fails to mention the many other tests that are performed.

I thought maybe I was a bit harsh, when I used the term "quack" in an earlier post, but after reading the Q & A in the link posted above, it is clear that he doesn't like to be challenged and he is adamant that his thinking is right and there is no other way, despite all those that disagree with him.

Maybe I missed it in a prior post, but I am curious what started him on his agenda and why he has continued it for so many years.

All of the above is JMO!

 

[SophieRose]

http://www.insidebayarea.com/news/ci_24787953/jahi-mcmath-neurologist-present-test-results-at-closed

"Unfortunately, the medical condition of Jahi -- she meets all the criteria of brain death," Dr. Paul Fisher said from a podium during an open court hearing in front of Alameda County Superior Court Judge Evelio Grillo.

The hearing continued after Fisher's testimony, where Dr. Robin Shanahan of Children's Hospital Oakland also was expected to give testimony.

 

[Donjeta]

http://www.insidebayarea.com/news/ci_24787953/jahi-mcmath-neurologist-present-test-results-at-closed

Fisher performed an electroencephalogram, or EEG, to measure heart activity and another test to determine if blood is flowing to Jahi's brain.

EEG measures brain electric activity. If you want to measure heart activity you do an ECG but that's not really relevant to the diagnosis of brain death.

Grillo denied a motion by Christopher Dolan, the attorney for Jahi's family, to keep Fisher's findings sealed. Grillo ruled that Fisher's report will be a public record.

 

[BeginnersLuck]

http://news.kron4.com/news/hospital...ly/?utm_medium=twitter&utm_source=twitterfeed

“Because Ms. McMath is dead, practically and legally, there is no course of medical treatment to continue or discontinue; there is nothing to which the family’s consent is applicable,” attorneys for the hospital said in the legal filing. “Cases cited by Petitioner, regarding the right to self-determination of treatment of a person living n a vegetative state, or on life support, are not applicable. To be blunt, Children’s is currently merely preserving Ms. McMath’s body from the natural post-mortem course of events. There is no legal, ethical or moral requirement that it continue to do so or that the family consent in the decision to stop doing so.”

 

[SophieRose]

http://www.sfgate.com/news/article/Jahi-McMath-is-brain-dead-doctor-testifies-5091298.php

State law also requires that a hospital provide families with a "reasonably brief period of accommodation" between a finding of brain death and the discontinuing of mechanical support, giving relatives a chance to gather at the patient's bedside.

While a hospital must make "reasonable efforts" to accommodate religious practices, it must also "consider the needs of other patients and prospective patients in urgent need of care," the law states.

 

[Donjeta]

http://www.insidebayarea.com/news/ci_24787953/jahi-mcmath-neurologist-present-test-results-at-closed
The family also wants to bring in a second expert: Dr. Paul A. Byrne, neonatologist, pediatrician and clinical professor of pediatrics at the University of Toledo's College of Medicine, who has clashed with other physicians over the diagnosis of "brain-dead." Byrne, a devout Catholic, has said that brain death is not true death, a belief that contrasts with the majority of the medical establishment.

Children's Hospital Oakland filed a petition to have the restraining order lifted if Fisher concludes that Jahi is brain-dead, and is opposing the appointment of Byrne, whom the hospital said "is neither a neurologist nor a California physician, is not qualified, and has already taken a position on this matter."

Dr Byrne has no need to travel and examine Jahi imo. Nothing that he could see would change his opinion if his position is that brain death is not death and no one is ever brain dead enough to warrant discontinuation of life support. He can easily argue that without seeing Jahi.

 

[gitana1]

She had the operation on Dec 9, brain death tests performed on Dec 11 and Dec 12, declared brain dead on Dec 12. Family told vent would be disconnected on Dec 17, family starts calling for an attorney on Dec 16, go to press on Dec 15. So the family had the five days that the above doctor says he often gives families to come to acceptance.

Okay, so they didn't move more quickly than protocol. It changes little to me. The family began seeking help before the 5 days. I don't get the impatience in this case on the part of people not related to this heartbroken family. Walk a mile. See how you react if it's your little girl. Five days may just not be enough for you to accept that the child you assured everything would be okay, the child that was breathing, talking, living, scared, just days before, is now suddenly gone forever, despite the fact that her body remains warm and she looks like she's sleeping. What stake do any of us have in this? It's like this angry determination that they accept this death and move on. Walk a mile.

 

[Yoda]

Okay, so they didn't move more quickly than protocol. It changes little to me. The family began seeking help before the 5 days. I don't get the impatience in this case on the part of people not related to this heartbroken family. Walk a mile. See how you react if it's your little girl. Five days may just not be enough for you to accept that the child you assured everything would be okay, the child that was breathing, talking, living, scared, just days before, is now suddenly gone forever, despite the fact that her body remains warm and she looks like she's sleeping. What stake do any of us have in this? It's like this angry determination that they accept this death and move on. Walk a mile.

I think a lot of us at WS are using our research and analysis to determine what should be done in this situation. I haven't posted yet, but I have read and debated, silently, along side other posters here. Every time I read a post and agree this darling little girl needs to be removed from the machines, my analytical brain says "correct decision made". But as my analytical brain winds down, my emotional and mommy brain cries out, "Don't let her go. There could be a chance." I don't think anyone on here underestimates the distress and heartbreak this mom, family, is going through. I wouldn't ever want to let go.
Maybe mom fighting to the highest court for her daughter will help lessen the pain. My prayers are with her. JMHO

 

[SwampMama]

here is the thing, and I'm going to explain it in the simplest terms so feel free to correct it , add on to it, point out references, etc.

Sometime in the 1970, medicine had advanced where organ transplants became viable- BUT the organs need to come from a body that still has blood flow, etc. So around 1980 the UDDA was established which set some rules in place about "brain death" because such patients were the ideal candidates to be an organ donor. They had no hope to live once the life support stopped, no chance of recovery but they did have viable organs and could offer their life saving organs to others.

So this is when "brain dead" came into play. It holds the unique distinction of having a patient who is breathing (not voluntarily), warm and has a heartbeat but is nevertheless "dead". Because of all of the legalities, ethics, etc, the definition of "dead" expanded to include brain dead people. This is why brain dead patients are considered "dead" and are not given any more life saving measures, eligible for insurance, etc.

I admit that it was a bit of a surprise to me to know that the hospital holds the legal right to pull the plug, it is not up to the families to give permission. The families are consulted, accomadated, etc but as you see, they have no right to demand that the plug not be pulled. In most states families have no legal recourse. It is the hospital's decision to remove life support. Families cannot prevent this. This is why Jahi's case is unusual. Her case actually made it to the courts. A few others have as well. such as the case of "Baby Mariah" from the mid 1990's.

However, Baby Mariah's case is quite different than Jahi's. (Here is my summary which is essentially what happened but may need clarification or minor correction) She was a 5 month old who was rushed to the hospital and found to be brain dead. It turned out that her father, who was an anesthesiologist, became frustrated at her and shook her, causing her injuries. He was alone with her at the time while her mother had gone to an appointment. He confessed to it (later recanted).

Her mother was a lawyer who stood by her husband and refused to believe he had any involvement in her death. he was not arrested while she was alive as the physical proof of her injuries could only be determined at autopsy. So her parents refused to allow her to be taken off of life support.

Baby Mariah was born premature and was an only child who had been conceived after a long bout with fertility. So obviously, she was a child very much wanted by her mother, not a typical victim of neglect. nevertheless, Mariah was brain dead. By the fact that her father (who was later convicted of her death) refused to allow the plug to be pulled was in fact getting away with murder. If she stayed on life support (although very much brain dead) then her father could NOT be charged with her death and the authorites did not have the forensic proof of her injuries.

Her parents went to court to demand she stay on life support. A catholic cardinal somehow arranged for a medical place to make an exception and take her as a patient and that was done. She was transferred there but about a month or less there. Her autopsy provided the proof of what her father had done and he was arrested. he was convicted and sentenced to 4 years, did his time and went home to his wife where he seems to be to this day.

Ok, so long story but that is a summary of a previous case where parent's refused to "allow" the plug to be pulled. It's relevance to this case does not have many parallels but it was landmark case because it actually made it to court and Mariah was not taken off life support (but only because another facility took her, I believe). If families can find a facility willing to take a brain dead patient, have the means to provide for them, etc, then they can stay on life support but that is exceedingly rare and usually only comes about when a case gains notoriety and public sympathy.

I do believe it is time to revisit the definitions and protocol of "brain death" for the purposes of including the newest technology, so that we are not inundated with cases like this and also to put a stop to the nonsense that Byrne is spouting about how brain death is recoverable, etc. I won't even bother to list the rest of his nonsense.

I do not believe Jahi will recover, no matter what. However, her case may pave the way for discussions to be had, protocol to be improved, awareness to take place and for people to really understand what brain death is, so that if they are ever faced with such a reality in a loved one, that they are better prepared to deal with it. Hopefully, that will be Jahi's legacy and that will be the good that comes from her case.

 

[K_Z]

Okay, so they didn't move more quickly than protocol. It changes little to me. The family began seeking help before the 5 days. I don't get the impatience in this case on the part of people not related to this heartbroken family. Walk a mile. See how you react if it's your little girl. Five days may just not be enough for you to accept that the child you assured everything would be okay, the child that was breathing, talking, living, scared, just days before, is now suddenly gone forever, despite the fact that her body remains warm and she looks like she's sleeping. What stake do any of us have in this? It's like this angry determination that they accept this death and move on. Walk a mile.

It is an awful situation, to be sure. Awful for everyone-- family, hospital, staff, and court personnel. I don't perceive anger on the part of those who call for acceptance-- I sense extreme pity, sadness, and frustration-- even bewilderment that the family could be in such prolonged denial.

I agree that this family needs a lot of time and professional support, and for that reason, they should have some comfort and privacy with Jahi. I think it's time that she be moved out of the ICU, and considered to be "terminal", as in DNR status. She can remain on a ventilator with palliative care (suctioning, turning, physical care) in another part of the hospital (a regular floor) as she completes her dying process. That would give her and the family privacy and dignity. The environment would be so much more peaceful and supportive, compared to the ICU environment. (I wonder if they have a palliative care unit at that hospital? Anyone know?)

I don't think there is any justification to continue extreme measures, such as intracranial pressure monitoring, BP and heart meds, etc, unless the family signals that they are considering organ donation, AND she is still a candidate for some solid organs (which I doubt). I highly doubt they will consider organ donation at this point. She has probably multiple sites of IV access, so a feeding tube isn't necessary. There is a good chance she is already having a lot of heart rhythm and BP drugs administered. It will take her longer to die with IV fluids and ventilation, but surely she will still die.

Unfortunately, in their grief and anger, I think the family would not perceive moving her to a regular room to be a good thing-- I think they would view it as abandonment and more "poor" treatment. I don't think there is any "win" situation to be had here-- for the family, or the hospital.

I have a very hard time with 2+ weeks of ICU care for a brain dead patient-- the cost, and the loss of a bed and resources for another child. Since the first determinations of brain death, she has had about $500K worth of care, at least. Money shouldn't drive every decision, but when we are talking about ICU resources, it should come into the discussion when the patient has been brain dead 2+ weeks. Ethically, I don't think it's right for her to remain in the ICU at this point. JMO.

 

[SwampMama]

I think a lot of us at WS are using our research and analysis to determine what should be done in this situation. I haven't posted yet, but I have read and debated, silently, along side other posters here. Every time I read a post and agree this darling little girl needs to be removed from the machines, my analytical brain says "correct decision made". But as my analytical brain winds down, my emotional and mommy brain cries out, "Don't let her go. There could be a chance." I don't think anyone on here underestimates the distress and heartbreak this mom, family, is going through. I wouldn't ever want to let go.
Maybe mom fighting to the highest court for her daughter will help lessen the pain. My prayers are with her. JMHO

I absolutely agree. yes, it would be extraordinary for the hospital to continue life support but it would have been a better choice that having this ugly battle and bad publicity. Jahi was not a terminally ill child who had battled cancer, had a catastrophic car crash, etc. She walked into that hospital for a surgery and her prognosis should have been good (Yes I understand there is a percentage of deaths with any procedure that is expected.)

She was a child who suddenly experienced a traumatic blood loss and the hospital has some responsibility in that and for how Jahi ended up. So for the hospital, who in many people's eyes caused this, to demand that she be removed from life support, comes off as harsh, especially at Christmas. I completely understand that, especially as a parent.

The hospital would have done better to have moved Jahi to a private room, kept her on vent , with minimal medical intervention and meds and allowed her family to be with her and let nature take its course because I do believe that Jahi will die soon, it is only a matter of time.

I will also add this. here on WS, we deal with so many cases of abused, maimed and murdered kids. We have parents who have kids that disappear and those parents go on their merry life until someone catches on. Then they claim the kids had an "accident" and died and they didn't seek help. We see parents that just don't give a damn and that are active abusers of their kids and we cannot even fathom that. We see so many of them here.

And here we have Jahi's mother who is not willing to give up on her child no matter what and for that she has my incredible empathy and respect. I am praying that they can have a conclusion to this that can bring them peace.

 

[SophieRose]

http://www.sfgate.com/news/article/Judge-rules-against-brain-dead-girl-s-family-5091298.php

Alameda County judge on Tuesday declined to force Children's Hospital Oakland to continue providing medical care to a 13-year-old girl who physicians declared brain-dead nearly two weeks ago after tonsil-removal surgery.

However, Jahi McMath will remain on a breathing machine for the time being, as Judge Evelio Grillo kept in place a restraining order until 5 p.m. Monday, giving the girl's family an opportunity to take its case to a higher court.

 

[txsvicki]

This thread has been an eye opener. I had no idea that the brain dead were legally considered corpses. I always thought they were very brain damaged but could live with help, and would die quicky if that help was terminated. I don't think families have done wrong when they allow it for organ transplant or done wrong when they terminate ventilation. But, my problem is with God. Maybe it's my age and getting old, but I can't accept that God has already taken the soul until the life support is removed and the blood and oxygen stop flowing with all body processes stopping, for good.

 

[jjenny]

I absolutely agree. yes, it would be extraordinary for the hospital to continue life support but it would have been a better choice that having this ugly battle and bad publicity. Jahi was not a terminally ill child who had battled cancer, had a catastrophic car crash, etc. She walked into that hospital for a surgery and her prognosis should have been good (Yes I understand there is a percentage of deaths with any procedure that is expected.)

She was a child who suddenly experienced a traumatic blood loss and the hospital has some responsibility in that and for how Jahi ended up. So for the hospital, who in many people's eyes caused this, to demand that she be removed from life support, comes off as harsh, especially at Christmas. I completely understand that, especially as a parent.

The hospital would have done better to have moved Jahi to a private room, kept her on vent , with minimal medical intervention and meds and allowed her family to be with her and let nature take its course because I do believe that Jahi will die soon, it is only a matter of time.

I will also add this. here on WS, we deal with so many cases of abused, maimed and murdered kids. We have parents who have kids that disappear and those parents go on their merry life until someone catches on. Then they claim the kids had an "accident" and died and they didn't seek help. We see parents that just don't give a damn and that are active abusers of their kids and we cannot even fathom that. We see so many of them here.

And here we have Jahi's mother who is not willing to give up on her child no matter what and for that she has my incredible empathy and respect. I am praying that they can have a conclusion to this that can bring them peace.

She is already legally dead. Her brain has no function.
Machine is pumping for her.
So I am not sure what you mean by "she will die soon."

 

[K_Z]

She is already legally dead. Her brain has no function.
Machine is pumping for her.
So I am not sure what you mean by "she will die soon."

I'm not Swamp Mama, but I used the same phrase/ term in my post above.

What I meant by "die" is permanent and irreversible cardiac arrest. I used a colloquial phrase in that post, rather than a medical one.

At some point, her heart will stop even if she is on the ventilator.