Friday, 26 August 2016

Bad journalism

I'm not a writer.  I dabble a bit here and there and I've even gotten paid for it a few times (Thanks, Daily Beast!), but I don't really pretend to be a writer.  That said, I'm certainly not a journalist.  I don't pretend to be one of them either, so I can't really say I understand the ethics of journalism per se.  I do understand ethics in general, however, so I believe I can definitively say that journalists should report the truth.

That doesn't always happen.

Take the coverage on little Israel Stinson, for example.  In case you haven't been following this very sad case, Israel was a 2-year old boy in California who had an asthma attack nearly five months ago at the beginning of April.  He was initially taken to a hospital and stabilised, then he was moved to the paediatric intensive care at another hospital where he unfortunately suffered cardiac arrest.  After extensive testing he was pronounced brain dead, but he was still moved to yet another hospital for further evaluation.  Two more doctors at the third hospital performed brain death evaluations and again pronounced him brain dead.  Plans were made to remove him from life support.

Ah ah ah, not so fast.

Israel's parents refused to accept the diagnosis, and after much legal wrangling and online fundraising they were able to airlift him to Guatemala where he had feeding and breathing tubes placed.  According to Israel's parents, a paediatric neurologist in Guatemala saw "some brain activity" on an EEG (I have seen no corroborating evidence from any doctor or any report), which supposedly showed that he was not brain dead.  Then about two weeks ago he was transferred back to California, this time to Children's Hospital Los Angeles, with hopes that his parents, Jonee Fonseca and Nate Stinson, could eventually care for him at home.  They got a restraining order preventing the hospital from doing any more brain death studies, presumably because they were afraid of the results - that he was still brain dead.

And as has always been the case in brain death in the entirety of human history, Israel's brain death was not reversible.  A California judge lifted the restraining order yesterday, and as soon as Israel was taken off somatic support, he stopped breathing.  Exactly as would be expected in a brain dead patient.

As a parent (and as a doctor) it upsets me viscerally me that this little boy was kept in limbo for so long because his parents (like those of Jahi McMath) refused to accept that their son was gone, but what exasperates me even more is the way the press has covered it:


+
You get the idea.  The verbiage is strikingly similar, and it is similarly misleading.  No, Israel did NOT die after being removed from life support.  Israel died nearly five months ago when his heart stopped and his brain was deprived of oxygen for 40 minutes.  But it is much more sensational to report that a toddler died after being removed from life support, because it implies the hospital was doing something wrong.

The headlines are misleading enough, but the articles are infuriating - the implications turn into downright accusations.

The most egregious was from Fox 40, a news station based in Sacramento (where, probably not coincidentally, Israel was first declared brain dead at UC Davis).  I can not even sum up the stupidity here, so I will let their own words damn them as the article opens:
A Vacaville 2-year-old is dead, not because of the severe respiratory illness that stole his vibrancy along with his breath last April, but because of the heartless action by a hospital in the midst of an appeal, according to his loved ones and his lawyers.
I can't even.  I want to even, but I can't.  This is how this ridiculous article starts, but if you can believe it, it gets even worse.

"This is a sad, sad state because this is an execution of an innocent 2-year-old in this country. This child was alive and this child was not brain dead," said Attorney Kevin Snider. 
An execution, Snider says, carried out by Children's Hospital of Los Angeles on his client Baby Israel Stinson. 
"Unfortunately the courts and the medical community wanted to rush in and pull the plug on him to be crass," he said. 
Are these people fucking serious?  Sure some doctors (surgeons, mainly) seem to enjoy being crass, but do they really think that doctors are in the business of killing toddlers?  Even putting aside the ridiculous bullshit from the lawyer, is there any such thing as journalistic integrity with these writers?  If there is, I completely missed it.  How could they possibly include that insane quote?  An execution?  Really??

Despite this, Fox 40 made absolutely no effort to show the other side of the issue - that three different doctors at two separate hospitals had all performed independent brain death studies, and all had found the same thing - that he was brain dead.  There was no mention that the EEG is not a definitive study for brain death and that there had been no confirmation of the supposed "brain activity".  There was no comment whatsoever that Israel had been completely unresponsive and had not opened his eyes since his cardiac arrest.  Nothing.  Zero.  Nil.  And of course because of privacy laws in the United States, the hospital was unable to comment on the entire affair and defend their entirely defensible actions.

KCRA, another news station from Sacramento (surprise, surprise) included the insane "execution" quote from Kevin Snider but took it even further:
"This was an execution of an innocent 2-year-old by the authority of California,” Snider said. “Had this child been a murderer or a terrorist, he would have had far more appellate rights by our courts than he was given.”
Wha . . . what . . . WHAT?  Are you . . . WHAT??  This child was given nearly five months to get better.  He didn't.  He was declared dead by three different doctors, and this clown calls this an execution?  Hyperbole does not even begin to describe this putrid cesspool of flapdoodle.  But KCRA doubles down with more Snider claptrap at the end of the article:
"Though society has produced medical geniuses, it also has not produced with people with a high moral IQ in the medical field sadly," Snider said.
I don't believe any more needs to be said about that.  I nearly screamed when I read it, and I was tempted to throw my computer across the room when I typed it.  It just speaks for itself.

And to put a little cherry on top, Israel's parents are reportedly planning on suing Children's Hospital LA, because of course.

Sigh . . .

My final thoughts on Israel's saga is that he is finally at rest.  Finally.  I hope Jonee Fonseca and Nate Stinson will eventually feel some sense of closure.  Israel had been gone for a long time, and his continued presence in a hospital bed was only causing his family undue grief.

I honestly and truly wish them peace.

289 comments:

  1. and the "journalists" have all closed commenting on their articles, because they KNOW people who favor truth over hyperbole will point out that he died 5 months ago, and that the cause of death was his parents' neglect.

    and point ot to FOX that his parents have been freeloading off the system for the last 5 months. that this innocent child is the child of a class of people their favored political party normally reviles.

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    1. But you know Fux News can't admit they're a bunch of bigots -- it would be too much like telling the truth.

      Five will get you ten that Cheeto will have the nerve to comment on this case, since this is Give-Speeches-to-White-Suburbanites-In-Order-To-Court-The-Black-Vote week in Trumpland. He'll find a way to make it seem that Israel's parents wouldn't have lost their son if he was president. Or he'll have Ann Coulter say it for him, sine she's completely off the rails right now.

      Everywhere we went in Cuba, my old man's family & friends kept asking me ¿Qué diablos pasa con Donald Trump? But he defies explanation.

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  2. I was shocked last night reading that story from Fox news. I yelled out and had to read it over to see if I read it right. Almost like what the National Enquire would put in their rag paper.
    Mary

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    1. well, Rupert Murdoch DOES own the UK equivalent of the enquirer.

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    2. Mary, I've had that same thought...not only about these recent articles related to Israel Stinson and the other "brain death dispute" cases we've followed, but about journalism in general.

      When I was a child, prior to the age of "instant news" via the internet, my parents and grandparents kept themselves informed about what was happening in the world by reading those relics called "newspapers," and also watching and listening to the relatively brief TV and radio newscasts offered by local media outlets. "Getting the paper" was a regular family routine for the adults.

      As I got older and learned to read, and went along on errands to the store, I'd see some stuff that kind of *resembled* the newspapers at home, but had very *different* kinds of stories. Sometimes the stories were about UFOs and monsters. Sometimes they were about famous people, like entertainers or athletes, but they were about very strange things they'd done.

      When I'd ask about these odd newspapers in the holders near the supermarket checkout lines, Mom and Grandma always laughed, and explained that these weren't really "newspapers," but "gossip papers" with stories that weren't really true, but just amusing for some people to read. So, we always knew the difference between the newspapers that would give us accurate information about current events, and the junk showcased by the Enquirer, the Globe, and others of the tabloid genre. We'd laugh at the silly stories on the cover, but never bothered to actually buy them and read them.

      Now, it seems that there's often little difference between mainstream media and the tabloids, whether in print, online, or on TV and radio. Fact-checking and objectivity are too often absent from today's version of "reporting the news."

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    3. Wait. Don't put down the Enquirer. How would the MIB keep the rest of the Dinalds from invading Earth without the Enquirer?

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  3. Yep, the stories aren't allowing comments. I so badly wanted to comment on the stupid things in the articles. The Sacramento Bee stories are better, in that they cover history of the case, but that site isn't allowing comments on the Israel stories, either. SacBee did include a quote from the lawyer saying that "They killed him" but didn't use the execution quote.
    http://www.sacbee.com/news/local/article97861097.html

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  4. And nowhere in any of this do they ever mention that if the parents had only given this child his asthma medication in the first place, this might have been avoided. But...lets sue the doctors and hospitals

    Kate Johnson

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    1. That's right, Kate. I haven't seen that anywhere except in the court filings. I'm sure Jonee is going to sue Children's Hospital now for "killing" her son.

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    2. and that the hospital told both the parents AND children's protective services in December that if they continued being non-compliant he was likely to have a fatal attack.

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    3. I wish the county would go after the parents for causing this mess.

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    4. That was one mistake the judge in the Kaiser case made. There was a representative from family services on hand but when the family promised they were "really, really going to find another doctor or transfer facility this time" the judge dismissed the guy.

      At one point the judge entertained notions of appointing a guardian for Israel other than his mother due to the non-compliance issues. He should have gone through with that long before they whisked Israel off to Guatemala.

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    5. I do remember that mention of a guardian ad litem, and commented at the time that such an action, when the child is living with a parent who has legal custody, doesn't happen unless there's some reason for authorities to believe that the parent isn't acting in the child's best interest. Too bad that didn't happen in this case.

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  5. KCRA 3 isn't a Fox news affiliate, it's an NBC affiliate.

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  6. If they could only see it - perhaps they will, in time - the hospital and the courts have saved this family from a nightmare.

    Think of the McMath situation. It's been several YEARS now, they are keeping an unresponsive body "alive" in a bed, she has never opened her eyes and never will. Is that the kind of future any sane person wishes for? If this baby had been alive he would have shown it by now.

    That's not living, not for anyone, not for Israel, not for his family. They are young, they have another child and can have more. They need to think about the future.

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    1. they shouldn't have more. yes I know that is terribly elitist of me, but they already killed one through neglect.

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    2. The father also has another child. Probably neglects all the kids.

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  7. The Save Israel Stinson Life Facebook page is just chockfull of tidbits about how the hospital refused to treat him (well, duh, hospitals don't treat dead people) and how much better Israel was doing after getting a feeding tube and vent installed. I am just gobsmacked over how many people think keeping a dead person on somatic support is a good thing.

    https://www.facebook.com/SaveIsraelStinsonLife/?fref=ts

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    1. Don't know which hospital they are referring to, but anyone reading Dr. Myette's testimony during the hearing on 4/15/16 can see the extent the doctors and nurses went through to keep his body "stabilized" while parents were busy filing appeals and injunctions. Start around page 25 if you don't have time to read it all. Very informative. http://thaddeuspope.com/images/Stinson_v_UC_Davis_Placer_Cty_docs_.pdf

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  8. (Sigh) This is what happens when tragedy meets scientific illiteracy. Someone should teach these "journalists" the Iron Islands saying (for all you GoT lovers): "What is dead can never die." As it stands, they're just perpetuating rampant misunderstanding of what brain death is and what it signifies: You're dead. And, I might add, in covering it this way they continue to torture the family as well.

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  9. I am awaiting with interest any comment from the Jahi McMath family, sundry lawyers and supporters regarding Israel Stinson.

    I noted in the fox news story http://www.foxnews.com/health/2016/08/26/california-toddler-in-middle-legal-fight-dies-after-ventilator-removed.html

    Stinson's mother, Jonee Fonseca, told the Sacramento Bee from the child's bedside at Children's Hospital Los Angeles that the ventilator was turned off at 3 p.m. and the 2-year-old from Vacaville died almost immediately after.

    The keywords are "Almost Instantly" which would imply there was a moment when he was alive and then he wasn't, not possible since he was dead to begin with, but then why let the truth get in the way of a good story.

    Given the similarities in relation to brain death, disagreement and so on, will we hear Jahi supporters implying that perhaps Israel was not worthy of being healed by whichever god they happen to believe in?

    Does Jahi McMath have a different type of brain death perhaps, one that is recoverable from unlike Israel Stinson.

    Is there dead and then dead dead?
    Is Jahi only slightly dead whereas Israel was completely dead (at least once they took off his death support)

    o0o Will that be a new thing?
    Life support for those still alive and not dead
    Death support for those that are dead and are not going be alive, ever.

    Will you be able to insure for that?
    What would the premium be?
    How much will it pay out in the event of a claim?
    How long will it continue to be paid out?
    What will be covered?
    Will it be a lump sum or a weekly/monthly payout?
    Who will decide when to end the payout?

    Will they decide that Israel was called by god and went despite the doctors best efforts and that of the courts and he will now be a martyr to their cause and possibly even a saint?

    I do wonder on what basis the family will be suing the doctors.
    Will it be because he died in April and the hospital is at fault?

    Will it be because he died in august and the hospital is at fault for removing his life support on the orders of the court?

    Will they be sung for emotional, psychological damage because they were being told by certain doctors their son was alive when other sensible doctors had said he was brain dead and they were conned/mislead/deceived into believing he was alive and could be back home albeit profoundly disabled?

    Will they be suing because they can and because, well, money is money and there s a lot floating around when it comes to hospitals, malpractice etc and they want their share?

    I now expect a book, possibly a movie, reports of miraculous healing of other children whose parents prayed to god/Israel Stinson?

    There is money to be made,interviews, selling their story to the highest bidder, a gofundme page to help pay for family 'expenses'/funeral costs, the obligatory book about their son and how he inspired others and how the family fought against the Man to prove their son was alive and he was killed on orders from Mr Big to protect some great secret (oops I am slipping into conspiraloon territory here)

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  10. Journalists want to sell stories. Facts don't matter as long as they can keep a byline somewhere in order to bring home the bacon.

    The Snider's-shyster lawyers that they are, are trying to build a practice. Facts don't matter to them either.

    And one fact that they are totally glossing over is that the court records from before they left Kaiser clearly states that CPS was involved. Apparently both parents smoked (both cigarets and other goodies) around their two children, and failed to follow physician orders (including medication orders) even after they were warned that failure to follow directions could result in a fatal bronchospasm.

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    1. If the parents were both smokers I can't think of anything worse, especially if you have an asthmatic child.

      I suspected as much when, shortly after Israel was hospitalized, his parents released a video of happier times. Israel was laughing and giggling and that kind of croupy sound children of smokers have was evident. Sadly, they get a smoker's cough just like their parents.

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  11. What I don't understand is why they brought him back here then? Couldn't the "specialist" in Guatemala who claimed he had brain activity, continue to treat him? But I imagine it was all about the mighty dollar and hoping someone else was going to pay for somatic support

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    1. They were kicked out of the first foreign hospital for racking up too many unpaid bills. They moved him into another facility but didn't have the funds to pay that one either. My guess is they were being evicted again which made a sudden return to the US necessary.

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    2. Where did you see they got kicked out of the first hospital?

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    3. Check out these two links:

      https://www.facebook.com/photo.php?fbid=10154081042057909&set=p.10154081042057909&type=3&theater

      https://www.gofundme.com/bringisraelhome

      The issue with the first foreign hospital was mentioned early on by a RTL group. They were asking for emergency donations to pay for his care or the hospital was going to transfer him. According to the post I linked to this happened. Then they couldn't raise enough to pay the second hospital either as mentioned on the GFM page which was started specifically to raise money for hospital bills and a flight back to the states.

      My guess is the second hospital couldn't afford to keep up the free care either which is why the sudden flight out of there. The healthcare in Guatemala is in crisis due to lack of resources. They only have a couple of relatively good hospitals and the majority of Guatemalans must travel to Guatemala City for advanced care.

      This makes the entire situation even more frustrating. The RTL groups somehow convinced a cash-strapped hospital in a poor foreign country to accept a brain dead patient when they didn't have the funds to pay for it.

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    4. medical fraud tourism: the new patient abuse.

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    5. According to one commenter on the SacBee article, the first hospital to accommodate Israel's family was one run by Catholic nuns, and when resources there were strained, Israel was transferred to Roosevelt Hospital, which is a public hospital that provides "universal health care" to indigent citizens.

      But resources are scarce there too...the hospital has just 152 general medicine beds, and just 12 ICU beds! So, not even all of the Guatemalan *citizens* who need care can be accommodated. One wonders how many living patients who really could have benefitted from ICU care didn't receive it, due to a non-citizen family without financial resources using the ICU to provide somatic support to a brain-dead body.

      http://wustlwugi.blogspot.com/p/roosevelt-hospital_17.html

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    6. Another thought occurred to me after I made the post above. The trip back to the USA has been portrayed by the family and RTL advocates as "returning home," after Israel's condition "improved so much" in Guatemala, towards the goal of the family setting up home care for him. But now I'm wondering if that return trip wasn't just a "flight" in the literal sense, but an emergency move to flee another untenable situation and again delay the inevitable.

      I don't know the specifics of medical testing for brain death in Guatemala, but since all of us humans come equipped with the same basic physical systems, it's reasonable to assume that doctors around the world study and deal with this same basic information. So, I'm wondering if, after many weeks of observing Israel, the docs at Roosevelt Hospital finally told the family that there was nothing more to be done, and that *they* intended to terminate vent support on a certain date if the family didn't remove Israel from their ICU.

      Remember that the info we've gotten from the family and attorneys about the doctors in Guatemala *not* determining Israel to be brain dead hasn't (as of yet) been corroborated by *any* actual doctor's statements or medical testing reports filed with the court documents. So, we don't even know if the family reports of "having some brain waves show up on the EEG" and "taking some breaths on his own without the ventilator" are accurate.

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  12. Lifesite "News" is, of course, doing a great job reporting this is a factual, non-biased way: https://www.lifesitenews.com/news/child-dies-after-la-hospital-pulls-life-support-against-parents-wishes

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    1. LOL. Exactly. On their about us page they say, "1. Accuracy in content is given high priority."
      Well, that's good to know....(eye roll)

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    2. they seem to have misspelled "systematic suppression of people who correct our misrepresentations"

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    3. It's also pretty funny that the "evidence" they give for people "recovering" from brain death is......their own reporting.

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  13. I'm glad that he will now finally be allowed to rest in peace. I hope his parents realize that no matter how much they wanted to believe that there was still life in his little body, there was no life. I hope they are able to grieve without hating those who knew from the start that their beautiful little boy was dead. He was such a cute little guy, and I'm sure he was much loved - if only love didn't blind people to the truth at times, everyone's life would have been easier. Not Israel's - at least he wasn't suffering, and I thank God for that.

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    1. At the risk of using someone else's tragedy as an example of a better approach, this family realized that their little boy was already gone, and allowed his organs to be donated: http://www.usmagazine.com/celebrity-news/news/mma-fighters-son-killed-in-suspected-dui-hit-and-run-w438142

      There are so many children desperately in need of organs, and so few donors...I do hope it gives this family some comfort in the midst of their grief to know that their gift is helping other children to live, and a part of their little boy is living on through them. (I know, it sounds terribly trite, but it's true nonetheless, and if something good can come from a tragic situation, well...)

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  14. Hi Doc.

    The stories get even better concerning Jahi McMath
    Take this wonderful article from lifesitenews.com


    HERNDON, Virginia, July 14, 2016 (LifeSiteNews) — The mother of a teenager who was declared “brain dead” and had to be transferred to a hospital across the country in order to continue receiving medical care told LifeSiteNews in an exclusive video interview that her daughter gives her the strength to continue fighting.

    Nailah Winkfield, the mother of Jahi McMath, told LifeSiteNews at the 2016 National Right to Life Convention that despite having received death threats for keeping Jahi alive, God — and Jahi herself — give her the strength to move forward in the legal and medical battles surrounding Jahi’s situation.

    In 2013, after routine surgery for sleep apnea and to remove her tonsils, then 13-year-old Jahi went into cardiac arrest. She lost oxygen to her brain and a lot of blood, and doctors at a California children’s hospital subsequently declared her brain dead. Jahi’s family did not want the care keeping her alive withdrawn and had to battle the hospital for their daughter’s life. After Jahi’s “brain death” diagnosis, the hospital refused to give her medical care because in California a “brain death” diagnosis legally classifies a person as deceased.

    Jahi’s family was eventually allowed to move her to a hospital in New Jersey, and she is now well enough to live at home with her mother.

    “To me, there’s nothing more important to me in this world than my kid, so I’d rather them take my life than to take her,” Winkfield said. “And I always tell people all the time, I’d pull the trigger on myself before I’d pull the plug on Jahi. And I’m serious about that. I would not let anything happen to her within my control.”

    Winkfield said one of the underlying issues in the way the hospital treated Jahi was money. Had Jahi died, the hospital would have paid Jahi’s family $250,000, but Jahi surviving surgery with serious complications could mean a much heftier price.

    “My kid’s life has no price tag on it,” Winkfield said. “So there’s nothing that they could tell me, there’s no amount of money they could give me in the world that could give me back what my daughter lost: her ability to walk, talk, laugh, smile. I miss those things. There’s no money that could give me that back.”

    To read rest of story, visit
    https://www.lifesitenews.com/news/watch-id-pull-the-trigger-on-myself-before-id-pull-the-plug-on-jahi-moms-fi

    In particular this little nugget:

    In 2013, after routine surgery for sleep apnea and to remove her tonsils, then 13-year-old Jahi went into cardiac arrest.

    And then this doozy which made me snort in derision

    Jahi’s family was eventually allowed to move her to a hospital in New Jersey, and she is now well enough to live at home with her mother.

    Yep, you read it right, i had to reread it several times due to the sheer WTFness of it (is this a word?)

    She is now well enough to live at home with her mother.

    Apparently in their sad little world, being dead makes you well enough to to live at home.

    If you hear strange noises it is Me banging my head on my desk in disbelief and concern that those people are breeding.

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    1. as I said when the conditions under which she would agree to pull the plug on Jahi: That is acceptable.

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    2. "Jahi’s family was eventually allowed to move her to a hospital in New Jersey, and she is now well enough to live at home with her mother."

      This type of blatant BS that those mom's of current brain dead children get by with, should be a crime in itself.
      Grrr, their spin on things galls me to no end.

      SMH

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    3. Problem is, this kind of reporting also gives false hope to families of *other* kids diagnosed with DDNC.

      "Well enough to live at home with her mother" suggests that Jahi is like lots of other living kids with disabilities, who have definite physical challenges and limitations, but are still very "present" in terms of being able to interact with the world around them. This gets parents thinking that if only they can get their child the surgeries needed for efficient vent support and feeding, they can bring the child home and s/he will not only survive, but "get better."

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  15. http://www.mercurynews.com/bay-area-news/ci_30124280/jahi-mcmath-family-clears-another-legal-hurdle-civil

    Softship

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    1. they've cleared that hurdle at least five times, already.

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    2. and I see from the fact I've commented on it over a month ago, that is an old article.

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  16. https://m.facebook.com/israelstinsonbraindead/

    I have reading this Facebook page somebody started not long ago. It said Israel was first at Nuestra Senora del Piler hospital but due to lack of payment was sent to Roosevelt Hospital ( both in Guatemala. ) I had looked up the second hospital online. I will have to find the link but it talks about the condition on the respiratory dept. This hospital very over crowded. Doctors and nurses do there best but there is lack of supplies and broken equipment. Read where the vent patients in ICU are close to each other in one room. If one gets an infection they all get it. I wonder if they got had to leave due to no payment, and if Israel had a lung infection.
    Another thing I saw was on the Life Legal Defence Facebook page there is a recent picture of Israel and he looks so much bigger, his face is bigger.
    Mary

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    1. He was never transferred to Roosevelt. Not sure where that info came from. Taken directly from NSdP to CHLA.

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  17. Oh, no. There is another case now, this one in Montana. A 7 year old boy who had a "swimming accident." That's the only information given out as to what happened. The parents are going to court on Monday because they don't want an apnea test on their child. The parents are fight a brain death diagnosis. I'm not sure, but Byrne may have some involvement.

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    1. OK, I just don't understand this. I have a TON of medical issues; I have CF and I'm a double lung transplant recipient (which, according to these crazy people, means I basically killed my donor, but whatever). My parents have TONS of experience with medical procedure, and I cannot imagine them ever saying, "No, we don't want this test done on our child."
      I can understand how heartbreaking it must be to have your child die. But at the same time--why are these people fighting the truth? Why do they think that delaying the test means delaying the inevitable?

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    2. They are believing their son isn't dead and that there will be a miracle and Jesus will heal him. Someone on their Facebook feed posted an article from Lifesite news stating that the apnea test causes brain necrosis and is harmful, so the family does not want their child to have the test. Just reading between the lines on the page, it sounds like the doctors believe the child is brain dead and want to remove the vent. They father was even considering moving his son to New Jersey!

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    3. You can thank The Life Legal Defense Foundation and Paul Byrne for this new tactic. They were successful in the Alex Pierce drowning and the Mirranda Grace Lawson case in which the toddler choked on a piece of popcorn.

      Apparently, now every parent who faces their child's possible brain death diagnosis will be filing suit to prevent the testing. I blame the judges most of all. This shouldn't even be an issue that the medical professionals have to face.

      If judges are going to prevent hospitals from diagnosing the condition of their patients then they should be allowed to discharge them.

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    4. This comment has been removed by the author.

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  18. I've practiced pediatric critical/intensive care for over 30 years and have cared for many children like this. I have a couple of thoughts and some background information.

    Determination of brain death in people over a year of age is a clinical diagnosis; that is, you do it at the bedside with a series of simple tests. We then repeat them after an interval, usually a day or so. But it's not uncommon for families to have difficulty accepting the diagnosis. For those families we often do a confirmatory test, one that demonstrates lack of blood flow to the brain. Those tests are also quite simple: we inject either a radioactive tracer or a form of contrast material and then scan the head to look for evidence of blood flow to the brain. I would be surprised if this child didn't receive at least one of those tests, and probably more than once. Lack of brain blood flow confirms brain death because the brain cannot live without oxygen and other nutrients.

    Even when blood flow studies confirm brain death, it is still not uncommon for families to have great difficulty accepting it. What most of us then do is allow some time, often several days, for prayer, miracles, and whatever else the family tries to work. Sometimes we wait a few days for other family members to arrive to be there. But then we move ahead because it is unethical to provide futile care.

    Even then we sometimes are at an impasse. I've had to go to court several times myself on this. In my experience, in all of those cases it was fundamentally because one or more of the family felt responsible in some way for the child's death. That may be part of this case. The most troubling cases are when the child died from abuse, which is generally an unwitnessed crime. Then the potential for homicide or neglect charges emerges.

    In my experience I've never seen the press do a good job reporting on these sorts of cases. They like sensationalism and always have.

    And Doc -- you say you're not a writer. I guess I am in that I've published a bunch of books I've been paid money for, but you're quite a good writer. Emphatic, clear-minded, and well-written. So keep it up.

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    Replies
    1. He did have the radioactive test and his grandmother and aunt were present for it.

      Delete
    2. Dr. Johnson, you've mentioned an important dynamic that I've noticed in several of these disputed brain death cases that we've followed in recent times...the parental guilt factor.

      Jahi McMath's family may have contributed to her demise by not following the post-surgical instructions to not allow her to have food or speak, and by those DIY suctioning attempts when bleeding was noticed. The choking obstruction that caused Mirranda Lawson's death may have been avoided if her parents had prevented her from getting hold of popcorn (not a good food for toddlers, since they tend to try to suck it in without chewing). And, as we know, Israel Stinson's final and fatal asthma attack may have been prevented if his parents had followed medical advice regarding proper medication and avoiding known respiratory triggers like smoking in his presence.

      In fairness, we've also seen a few cases in which parents *weren't* directly involved in their child's sudden demise (Aden Hailu, Mikey LaVecchia, and Alex Pierce). Parents just had a hard time accepting the fact that the life of an active healthy child had been cut short so suddenly, which is understandable. Still, I have to wonder if their reticence to accept the DDNC was due, in part, to the media coverage of the Jahi McMath case, which may have heightened their fears of "giving up too soon."

      For many years now, families have been faced with the difficult situation of seeing vent support terminated for their ill or injured loved ones who have no chance of recovery. But all of these legal challenges to assert parental "rights" to reject medical evaluations are a more recent phenomenon.

      As Tania posted, we still have media articles out there which contain statements like, "Jahi’s family was eventually allowed to move her to a hospital in New Jersey, and she is now well enough to live at home with her mother." So, we now see other parents thinking that all they need to do is find the "right hospital" and the "right doctor" that will eventually enable them to take the body of their brain-dead child home and provide the "care" that will eventually enable recovery. They believe that they are fighting to protect the life of their child...when, in fact, that life has already ended.

      Delete
  19. Dr. Johnson, thank you for your thoughtful comments. I've followed your writing as well, especially regarding the Jahi McMath case, which, nearly three years later is still ongoing.

    If you follow Thaddeus Mason Pope's excellent Medical Futility Blog he has links to most of the court documents regarding these contentious cases. Israel Stinson's attending physician at Kaiser Roseville testified to his condition and all of the testing he had undergone at both UC Davis and Kaiser. UC Davis had done both a CT and MRI scan at the parent's request when they balked at the brain death diagnosis. Both scans showed Israel had suffered a herniated brain stem. However, the mother claimed in her testimony that the scans were inconclusive.

    At that point it is obvious that no amount of medical proof will convince such parents. In my opinion this new tactic of suing to prevent the diagnostic tests themselves is a step too far.

    I agree with your comments regarding DocB as well. Those of us who follow this blog can always count on him to offer his outspoken opinion as only he can.

    ReplyDelete
    Replies
    1. I agree with the Anonymous above - that if doctors are stopped from performing diagnostic tests, the they should discharge the patient.

      Delete
    2. Yes, Pope's Twitter feed and blog are worth following. He's a great aggregator of these sorts of issues with lots of good links.

      Delete
    3. Thank you to both Dr. Johnson and anon for the kind words.

      Delete
    4. I just saw that you have a Twitter account. That's good to know, even though I don't Tweet myself I like to follow people of interest.

      If you still blog I'd like to hear more about your opinion regarding these brain death disputes, especially the Jahi McMath case. It seems as though it's been winding its way through several jurisdictions forever with no end in sight.

      Delete
    5. DocB, Dr. Johnson is a man after your own heart. Check out his Twitter feed. He shares your opinion when it comes to anti-vaxxers chemtrail alarmists and other assorted tin foil hat types.

      Delete
    6. Anonymous, thanks for your interest. I've been blogging using my real name for 10 years. That does constrain my voice a bit, I suppose. Like Dr B, I sometimes post about vaccines, although that topic tends to attract anti-vax fanatic trolls who cruise the internet. Dr. B knows all about those. I've been a Super Moderator at one of the largest writers' sites (over 65,000 members) AbsoluteWrite, for a decade. We have to go on troll patrol daily there. It's never fun, but you learn a lot about troll behavior.

      Maybe I'll do a follow-up post on the Jahi McMath case. Eventually her tortured body will ultimately quit, but there are cases reported of brain dead patients going on for years, typically in countries and cultures that only recognize stopping of the heart as constituting death.

      Delete
    7. I researched some cases online when McMath became news. I remember reading of some poor mother who kept watch over her brain-dead son for twenty years. When his heart finally gave out and autopsy was performed, his brain had calcified. Twenty wasted years.

      Ah, here's the article: https://hods.org/pdf/Long%20Survival%20Following%20Baterial%20Meningits-Associated%20Brain%20Destruction1.pdf

      Delete
  20. All of the Facebook pages are open for discussion. You are missing out if you haven't read any of them, including Texas right to life.

    Also, the parents believe something sinister happened between getting out on ECMO, getting taken off ECMO "because his heart and lungs were working on their own" and then immediately taken for brain death tests and getting declared brain dead.

    ReplyDelete
  21. If you re-read Jonee's statement she said that Israel "...was placed on an ECMO machine and ventilator machine".

    From the time of Israel's cardiac arrest onward his heart and lungs never functioned on their own again. It was the vent that kept them functioning after his removal from the ECMO machine.

    You can't go by Jonee's interpretation of events. She had no understanding of what was happening. Instead, read the attending physician's declaration in the court reporter's transcripts.

    According to Dr. Myette's statement Israel's bronchospasm was so severe that even after UC Davis managed to resuscitate him they couldn't get air into his lungs. This was exactly the outcome his parents were warned about when they didn't comply with his asthma treatment plan four months prior to his fatal attack.

    ReplyDelete
    Replies
    1. I recall that Israel's mother also made several statements about him taking breaths on his own *without* the ventilator as she reported on the "progress" he'd supposedly made after being moved to Guatemala. Though I'm not a doctor, I have to believe that if the doctors at CHLA had observed *anything* like this, or even what looked like an *attempt* at breathing on his own, they would never have taken action to remove vent support.

      Delete
    2. Of course they wouldn't! Contrary to what the family and their attorneys are saying hospitals are not in the business of "executing" patients.

      Delete
    3. Remember I wrote about baby Knox Stine. Hospital in Nevada did the apnea test on him and he was able to do 1-2 breaths per minute so he was not declared brain dead. He is at home on a vent.
      I believe Israel parents were led to believe he would make a full recovery by Dr. Byrne's and the RTL people.
      Mary

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    4. Mary, I'm not sure that Israel's parents were thinking he'd make a *full* recovery (as in, being as he was before the fatal asthma attack), but I do believe they were misled about what would have *really* been involved in "caring for him at home."

      I think they figured he'd need the vent and feeding tube, like Baby Knox, and if they could manage that themselves, with some supplemental help from home health care nurses, Israel would recover to the point where he'd at least attain some degree of consciousness, responsiveness, and interaction with the larger world. They probably *though* that this is what is happening with Jahi, based on reports from her family and Dr. Byrne. (As in, "Jahi left the hospital and is now well enough to live at home with her mother").

      They probably *didn't* realize that (1) Israel would need much more than just the vent and liquid nutrition...he would also have needed constant medical monitoring to adjust the various hormone replacement meds that would be needed to regulate all the bodily functions that the dead brain could no longer manage, and (2) That he would never actually recover any cognition or consciousness that would enable him to actually interact with them or anything else in the world, and the occasional movements observed were just spinal reflexes, not really "Israel responding."

      Delete
  22. Apologies to Doc and his devoted readers for briefly hijacking this thread, but Prof. Pope has posted an interesting new case related to the "consent needed for apnea test" issue. I posted on the "Apnea" thread too, but that one's getting so long that it takes forever to load, so read more here:

    http://medicalfutility.blogspot.com/2016/08/medical-malpractice-lawsuit-for.html

    ReplyDelete
  23. The Washington Post's version of the article similarly exasperating, in terms of "non-facts" from Alexandra Snyder being selectively reported...

    https://www.washingtonpost.com/news/morning-mix/wp/2016/08/26/hes-gone-anger-grief-as-plug-pulled-on-toddler-after-sudden-court-decision/

    "Alexandra Snyder, from LLDF, called the judge’s decision “unexpected” and said she was in court with Fonseca just last week. She said the hospital should not have turned off Israel’s ventilator until the parents got to see another, “independent” neurologist and that one had already agreed, although she refused to give his name."

    OK...there would be no reason to refuse...IF the doctor was qualified and credible.

    "She also said Israel’s parents were not asking the courts to keep him in the hospital forever, but rather wanted to take him home, and that the hospital’s hands were not tied by Thursday’s court ruling."

    Yeah...but..."home care" can't happen unless a family has the "home" in which to reside, and financial support for the "care" they want to administer. Israel's parents had neither, so were asking for private donations for both. Yes, the hospital's hands *were* tied, as long as the TRO stood, since there was no location to which Israel could be transferred. Sure, they didn't have to turn off the vent immediately after the judge ruled on their appeal, but with no viable transfer option in the foreseeable future, there was no reason to prolong a situation which served no one's best interests.

    “What I really don’t understand is why this hospital agreed to take this little boy in the first place,” she told The Post, saying the boy’s parents never would have brought Israel back to the United States if they had known the hospital was going to pull the plug. “They knew exactly what his condition was, what his treatment was, and they agreed to take him. But it appears they only accepted him as a patient to put him to death."

    As we've speculated before, it's doubtful that the hospital *did* know the full story. Once they figured out that Israel was indeed brain dead, and that the parents had no viable plan for funding somatic support on their own, they were under no obligation to continue to provide futile medical care. To insinuate that "they only accepted him as a patient to put him to death" is no less unjustified than calling their action "an execution."

    ReplyDelete
  24. Ms Snyder wonders why the hospital agreed to accept him. Well she could ask the hospital why they agreed to accept him, then the family could release the hospital from HIIPPA and we would all know.

    ReplyDelete
    Replies
    1. Wouldn't *that* be interesting? :) But of course we know it won't happen...

      Honestly, we don't even know for sure that the hospital "agreed" to accept Israel, much less what they were told (or not) about his condition.

      I'm also very suspicious of her statement that they "never would have brought Israel back to the USA if they had known the hospital was going to pull the plug." They *must* have known this was a possibility, considering the fact that there was a valid death certificate in place, due to three different doctors stating that he met the brain death criteria. I'm figuring they *did* know, but the attorneys were betting on getting the TRO extended on and on and on while their legal challenges continued. The only "surprise" here was that the court put a stop to their strategy.

      Delete
    2. they didn't count on a judge who knew the law and had a backbone.

      Delete
    3. “It’s a reprieve,” said attorney Alexandra Snyder, adding that the hospital also is required to allow an independent doctor to conduct a medical evaluation of Israel, who suffered severe brain damage as a result of cardiac arrest in April at UC Davis Medical Center.

      “We’ve asked for this for a long time,” said Snyder. “I’m hoping it’ll confirm that he does have brain activity.”

      Read more here: http://www.sacbee.com/news/local/health-and-medicine/article96570057.html#storylink=cpy

      In her last sentence Snyder admitted there was a possibility he would not be found alive.

      What remains to be reported is under what circumstances CHLA admitted Israel and whether they did their own brain death exams. I'm thinking that they must have but didn't do an EEG which Snyder was counting on to show brain waves.

      Perhaps DocB can elaborate on whether or not doing an EEG at this point would have made any difference. From my understanding it is not a required element.

      Delete
    4. I'm not Doc B, but you're correct. In most patients EEG is not part of a brain death determination because lack of cortical activity, which is what the EEG measures, is possible in a non-brain dead person. There is one small group of patients for whom EEG is used as part of the process -- small babies under 2 months of age. Declaring brain death in that population is a long, complicated process.

      Delete
    5. Thank you for the response Dr. Johnson. I wondered about the process for determining brain death in an infant and imagined it might be more complicated.

      Delete
    6. There are also some technical problems with EEG in this setting. You have to turn the sensitivity of the machine up very high, so high that interference from monitoring and other ICU equipment is common.

      Delete
    7. Dr. Johnson are you familiar with the Mirranda Grace Lawson case? Professor Pope has been documenting the court filings on his blog.

      Mirranda is a toddler who choked on a popcorn kernel this past May and has been in the VCU Medical Center's Pediatric Intensive Care Unit ever since. Her parents have succeeded thus far in preventing an apnea test. Her attending physicians feel strongly that she has been brain dead all this time but are unable to officially declare her death until they perform this final test.

      This appears to be a relatively recent phenomenon but have you ever confronted a similar situation in your practice?

      Delete
    8. I hadn't heard of that case, but I once experienced a similar situation. A family refused to allow us to do an apnea test. We went to court and got permission to do so via appointment of a guardian ad litem for the child, who consented. The judge did this, I think, because the case appeared to be one of abuse. The long delay (6 weeks) did affect the ability of the forensic pathologist to give a final diagnosis. That was in 2003 or so, as I recall. So it's not a new thing.

      Delete
    9. Thanks for the correction. I thought it was a recent legal tactic to delay a determination of brain death.

      The court had actually ruled in favor of allowing VCU to perform the test in spite of her parent's wishes but they put up a $30,000 bond in June to delay it. The way the court system works that bought them another 3 months. I believe they are approaching a deadline sometime in September.

      They are supposed to be trying to find a LTC facility in which to transfer her but without a tracheostomy and feeding tube I doubt one will accept. The court has not ordered VCU to perform those procedures.

      Delete
    10. This was a case of horrific child abuse that resulted in severe brain damage. The parents did not want to terminate life support because the father was responsible for her condition. Recently the court ruled in favor of discontinuing support in spite of the parent's objections. I don't believe this poor baby was brain dead, just severely damaged with no hope of recovering.

      http://medicalfutility.blogspot.com/#!/2016/08/baby-dinah-when-parents-are-wrong.html

      Delete
    11. Year and a Day Rule is the old school determination of whether a murder took place or if the person died of something other than criminal conduct. There's a good possibility in abuse/neglect cases that a parent would want to keep the body alive for a year and a day under the assumption that their jurisdiction relied on this rule so that a living loved one (usually a spouse, but not always) would escape criminal liability. The public has a vested interest in seeing that murderers do not escape punishment.

      The RTL movement's denial of the sleep apnea test and brain death is something completely different, and it's far to easy to confuse religious rights with actual science, especially in an era where religion seems to be more at war with science than it was during the Scopes Monkey Trial.

      And if Jahi McMath is at home, how do we know she's actually hooked up to anything or has a heartbeat? She could be mummifying instead. I mean, they are fighting all other known signs of death, why aren't they doing the Lazarus thing, stating she's still alive because, hey, Lazarus rose from the dead?

      Delete
    12. At least you didn't get chastised for your last paragraph...

      Delete
    13. Well apparently Ms Snyder doesn't read the documents that were filed by CHLA with the court because she has the answer to her question.

      Delete
    14. "Ms Snyder wonders why the hospital agreed to accept him. Well she could ask the hospital why they agreed to accept him, then the family could release the hospital from HIIPPA and we would all know."

      They agreed because they had no background or context!

      They were never told about the previous hospitalizations in Davis or Roseville. Outright lied to? Perhaps not. But lies of omission? Enough to fill an encyclopedia. And apparently enough to successfully convince the hospital that the events that led to his clinical state all happened out of country.

      OH the mountains of misinformation and the slick talking of lawyers.

      Delete
  25. Here's an article that explains what brain death is and even quotes an actual neurologist instead of just repeating the hyperbole the attorneys spew:

    http://www.goodhousekeeping.com/life/parenting/news/a40151/israel-stinson-brain-death/

    ReplyDelete
  26. I did read all 81 pages of the 4/15/16 hearing and was astonished at the efforts Dr. Myette took to bring the body into a "normal state" in order to complete the apnea test. Then I was shocked to read that, after listening to his testimony, plaintiff's lawyer asked if the doctor feared liability should he put in feeding tube and trach. His response was priceless . . . it was a matter of ethics . . . something lawyers obviously don't consider. Mom's lawyer also told the court that the doctors should do these procedures since they gave the body a transfusion due to anemia. Dr. Myette reminded the court that he was ordered to maintain the body while this dragged on. Her lawyer also called Dr. Byrne a pediatric neurologist all through this hearing. When the court learned he was a neonatologist, his recommendations were ignored.

    ReplyDelete
  27. Why did Ms Snyder and the family even think another doctor would come in to do another test? They weren't able to find a doctor back in April/May and what physician would want to get entangled with this mess. Ms Snyder and the family's handlers were reckless and poorly planned and executed Israel's departure and return to the US.

    ReplyDelete
    Replies
    1. I can't help but think that claiming they had another doctor to do another test was a delaying tactic. But I'm cynical that way.

      Delete
    2. You can argue all you want but not unless you change the UDDA's definition of brain death you will always have this problem.

      Delete
  28. I wonder if Israel's transfer was even formalized. I have a hard time believing that any hospital would accept a patient that had already been pronounced dead (with the obvious exception of the New Jersey insanity). If there was a funding issue and they were given a bums rush discharge from the hospital in Guatelama, they may have simply landed the plane and called 911. Under EMTALA rules and without definitive documentation of his brain dead status (and probably even with it - not their job to sort this mess out) the paramedics would have transported to the nearest appropriate facility. I think the children's hospital did the right thing by repeating the brain death exam - I am certain the parents were spouting some BS about tests in Guatemala showing he was not dead and had zero records to support this claim. This, combined with the need to be totally sure when you are withdrawing support from a toddler, cuz no one in medicine feels good about that. Ever.
    I think their hand was forced by their eviction from Guatemala and they probably felt like they had played this game before and "won", so it seemed like this would be a pretty safe move. Obviously, they were incorrect.
    The reason I don't think this was formalized is because there would have been discussion in the LA hospital prior to accepting a patient like this and I guarantee that lawyers would have been involved. The plan of care would have been spelled out clearly and it would not have been "We will provide ICU level care for your child's corpse forever." They gambled and lost. My only question is this...If they wanted to be safe from withdrawal of support, why didn't they fly to New Jersey?

    ReplyDelete
    Replies
    1. I wondered your last question myself. They had the air ambulance....why didn't they fly to New Jersey and take him through an ER there?
      Mary

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    2. This has to be the most poorly written fact free article yet:

      http://fox40.com/2016/08/29/mother-of-baby-israel-speaks-out-after-his-death/

      They say Israel was in a coma and an EEG is the definitive brain death test.

      Another interesting tidbit: They claim the mother's lawyers were trying to file another restraining order when the vent was disconnected at 3:10pm. The ruling dissolving the old TRO was filed at 8:30am. Jonee claimed the hospital gave her until 4:00pm to say goodbye so there was plenty of time to file another TRO. I think her attorneys realized it was over and didn't even attempt to file a new one.

      Delete
    3. Professor Pope posted the order dissolving the TRO. According to the document Jonee and her attorney were present when the judge issued her ruling at 8:30am. They were already at the court house so the attorney could have immediately filed for an emergency TRO yet hadn't done so as of 3:10 in the afternoon when the vent was disconnected.

      http://thaddeuspope.com/images/Stinson_v_CHLA_LASC_08-25-16_.pdf

      Delete
    4. @ Anon.30 Aug 23:28 - love the "fact free article" designation! :)

      More misinformation/disinformation...

      "Right when we got there they discussed home care with us, and not even two days later they, started telling us they wanted to perform their own test, but they never did their own test," said Fonseca.

      Hmm. Even if we allow for the fact that the hospital knew (or subsequently learned)about the death certificate and previous court actions, I find it impossible to believe that they'd take an action as decisive as recommending termination of vent support without doing *some* confirmatory testing of their own. The info that the hospital presented in their appeal to the TRO isn't yet posted, so we don't know for sure what they did. But when the matter at issue is determining the life or death of a patient (especially a young toddler, since kids usually have a capacity for recovery that adults may not), I have to think that the hospital's appeal was based on something more than "Oops! We changed our minds."

      "Instead Israel's mom says Children's L.A. suddenly deemed her son's Guatemalan medical records invalid and rushed to court to disconnect him from life support."

      Assuming that the "records" brought in referenced the EEG, it's more likely that the docs determined that the records were *insufficient* to disprove brain death, in the absence of *other* medical evidence of brain function.

      And, none of this was done in a "rush" that suggests an absence of thorough evaluation of the situation. Israel's family reportedly arrived at CHLA on August 7. Since the TRO to require continued medical support was filed on Aug. 18, Israel had already been there a week and a half by the time the hospital told the family of their intention to terminate support. This would have allowed plenty of time for docs to observe and test, *and* for the family and attorneys to bring in their "independent expert" if they had one.

      And, as we know, the "home care" solution was never a realistic option anyway, at least in CA. With a death certificate in place that had already been affirmed by court action, there were no resources available to support *any* kind of medical care for Israel, either in the hospital or at home/LTC facility.

      I do agree that there would have been no point in trying to file another TRO to appeal the dissolution of the first one, because there was no new information to present. There was no new evidence from an independent doctor's examination, or apparently even any definitive appointment set up with a doctor they were willing to name to *do* another evaluation. Going before the same judge to say "Give us even *more* time to get our act together" wouldn't have gotten a favorable response, when they haven't managed to do so for the past four months.

      Delete
    5. Some thoughts on the New Jersey option...

      I thought I remembered reading something about Angela Clemente having arranged a setup for Israel's family there, same as for Jahi's family. Yeah, she did...it's in a declaration submitted to the court on 4/27/2016.

      http://www.thaddeuspope.com/images/Stinson_v_UC_Davis_Placer_Cty_docs_.pdf

      (see Exhibit 1, pages 198-199)

      Not sure what went wrong there. But maybe it was a financial issue? Ms. Clemente represents herself as a "coordinator" for these types of transfers and whole-family relocations, but obviously depends on other "team members" to provide the necessary resources. Her "team," as identified in the declaration submitted to the court on Jahi's behalf in Dec. 2013, includes other familiar names associated with the RTL groups:

      https://lifelegaldefensefoundation.org/2014/01/06/declaration-angela-clemente/

      Thinking back to Steve Sanborn's comment on his GFM page, related to "the infamous foundation" not following through on whatever financial commitments had been made to Israel's family made me wonder if it was one of the groups that funds their "team." Maybe that's why the move to NJ didn't happen, and why the family ended up in Guatemala without sufficient funds?

      Delete
    6. IIRC, Jahi's family was able to get benefits after a three month residency in NJ, probably with the GFM proceeds. They also had support from Terri Schiavo's family and of course the hairdresser. Is rael's family was broke coming back, and may have been afraid of getting stranded on the East cost.

      Delete
    7. Kathy, that's exactly why I was thinking that maybe it was the Terri Schiavo Life and Hope Network, or one of the other foundations that has previously supported LLDF's projects, that didn't "come through" as expected. Israel's family still would have needed a place to stay, and money for other routine living expenses, if he had been accepted at a NJ hospital, as they established residency.

      Delete
    8. and schiavo may have blown all their money on Jahi.

      Delete
  29. There is a new picture of Jahi McMath on her Facebook page.
    Mary

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  30. Here's the link:

    https://www.facebook.com/keepJahiMcmathonlifesupport

    I see she still can't maintain her body temperature. As hot as it's been and she has at least three blankets piled on top of her and a knit cap to boot.
    I wonder if it's getter harder to stabilize her. Of course this might just be an old picture taken during colder weather although her little sister isn't dressed for winter.

    They promised to post more videos soon. I wonder if they will consist of an off camera voice commanding a movement followed by a finger or foot twitch like all of the others.

    ReplyDelete
    Replies
    1. "She has at least three blankets piled on top of her" is nothing but pure speculation.

      Delete
    2. Agreed. I've asked everyone to stop the speculation on Jahi's condition. Please respect that.

      Delete
    3. actually, the counting of blankets is not speculation. they are visible in the picture.

      Delete
    4. All I can say about Jahi is her mom, nurses and doctor are doing a good job taking care of her. Home health is hard, I know I do it 45 hours a week and my case nothing like Jahi's. It's been several since I did a vent case and it was very stressful.
      Mary

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    5. DocB, in my defense you wrote an entire blog post commenting on two different perspectives of the same picture and what a shadow beneath her nose might mean.

      Please just delete this and my post about the damn blankets.

      I didn't mean to offend anyone. From now on I'll keep my curiosity to my self and refrain from commenting, period. If I could remember how to access my stupid Google account I'd do it myself.

      Give a shout out to John for me. I see he's been around lately, here and on The Medical Futility Blog.

      Delete
    6. I don't get the blanket speculation comment.
      Mary

      Delete
    7. You're right, I did. And when her mother posts more videos (assuming she keeps her promise), I'm sore we'll all speculate more.

      I'm very undecided how I feel about all of it. Some days I want to say no, other days I'm more curious.

      I can't decide which I am today. So carry on, I guess.

      Delete
    8. The promised videos still haven't been released. If past actions are any indication they are waiting until later in the month since there's a case management conference scheduled for October 3rd.

      If it was the federal case Dolan would no doubt call a press conference and make a big media production out of it. However, the CMC is in regards to the state action and so far Brusavich hasn't demonstrated the same propensity for showmanship.

      Delete
  31. The blue cover under the two fleece blankets appears to have some type of cord attached to it. Is this a warming blanket?

    I enlarged the picture and noticed that Jahi's little sister is also wrapped up in a fleece blanket. Either this was taken last winter or they keep the air conditioning on the "ice box" setting.

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    Replies
    1. You enlarged the picture and still didn't figure out the electrode?

      Delete
  32. Back to the Stinson case. I just found some info we hadn't yet seen (Jonee Fonseca's petition for the TRO) included as an attachment in the Fonseca v. Smith filing posted by defendant on Aug. 31.

    Here: http://www.thaddeuspope.com/images/Fonseca_v._Smith_ED_Cal_2016_.pdf

    So, to update my Aug. 30 post on Medical Futility Blog, we do have some doctor names and other info.

    1. She does name three doctors who examined and treated Israel in Guatemala. There's no specific information about any testing they did other than the EEG, which is said to have shown enough activity to substantiate their opinion that Israel wasn't brain dead. No declarations or statements of test results from those doctors are included.

    2. She states that the staff at CHLA did confer with Dr. Zaldana, one of the Guatemalan docs, and agreed to accept Israel as a transfer patient.

    3. She states that the doctor the family had identified to do the independent exam of Israel was Dr. Alan Shewmon, but that CHLA had refused to allow him to do so. (I'll put that in Doc B's "News That Should Surprise No One" category).

    4. She states that the family had made contact with a facility called "Totally Kids," which is a long-term-care facility for kids with severe brain injuries, which was expected to have a bed available for Israel within a month, in case a transfer to home care was not an immediate option.

    Of course my curiosity compelled me to visit good old Google U, and I found this link to a facility in Loma Linda, CA.

    https://totallykids.com/subacute/

    It looks like they *do* handle the vent support, gastric feeding, and IV meds OK, but we don't know what kind of "rehabilitation" would be offered to a child who wasn't just severely brain injured, but actually brain dead. :( And, they do accept Medi-Cal, but of course the death certification might present an administrative obstacle. Another would be their admissions policy, which, of course, requires medical reports and treatment plan from the in-transferring doctor.

    ReplyDelete
    Replies
    1. This document is the CHLA appeal that triggered the final court ruling. It contains a great deal more information from the earlier hospitals, and the outlines the circumstances of his admission to CHLA.

      http://www.thaddeuspope.com/images/Childrens_Hosp_App_to_Dissolve_TRO_08-25-16.pdf

      It shows that CHLA admitted him for evaluation, not on any promise of ongoing treatment. When arranging the transfer, family and lawyers only gave CHLA reports from Guatemala. They were not given his US medical records, told that he had been tested and pronounced dead in April, or informed of the previous court rulings and death certificate.

      Delete
    2. It's interesting reading. Jonee lied. I'd been wondering why the hospital would agree to admit a patient with a death certificate.

      Delete
    3. Saying that she lied is kind of an understatement.

      Delete
  33. I wonder what DocB thinks of the evaluations of the two Guatemalan neurologists.

    The pediatric neurologist, Francisco Montiel said Israel: "showed no spontaneous respiratory effort; oculocepalic, oculovestibular and ciliospinal reflexes are absent; he shows no reaction to verbal stimuli however, upon physical stimulation he does show movement of 4 limbs; movement appears to be spinal in nature."

    His diagnosis of PVS was based on 2 EEG tests which showed: "slowmwaves of ver low amplitude neither of them being isoelectric"(sic)

    The neurologist Ruben Posadas also noted the absence of brain stem reflexes. He states: "There are primitive reflexes of defense and rejection, of position in both posterior and inferior, members, there are osteotendinoses reflexes present"

    His diagnosis:

    1. Deep coma state
    2. Persistent vegetative state, due to serious brain lesion
    3. Does not belong to the encephalic criteria of brain death (warm head temperature, keeps blood pressure and cardiac frequency without medication)

    Our speculation that CHLA admitted Israel on false pretenses was correct. They were led to believe he was a severely brain damaged but living patient. They were not informed of his death certificate and weren't aware of his prior medical records from UC Davis and Kaiser.

    Also noteworthy, despite the fact that Jonee Fonseca was at Israel's bedside 24/7 from the day he was admitted she failed to notify CHLA when she filed her initial TRO which gave them no opportunity to respond or present evidence before the judge granted it.

    Their lawyers also left Jonee a voicemail and an email on August 23, notifying her of their intent to file an ex parte application to dissolve the TRO but received no response.

    ReplyDelete
    Replies
    1. No spontaneous respirations and absent brainstem reflexes equals brain death. Isoelectric EEG is not necessary.

      Delete
    2. Thanks for your answer Doc. I just wonder how two neurologists can diagnose a Persistent Vegetative State when their own exams showed no brainstem reflexes. I was under the impression that people in a vegetative state have functioning brainstems and display sleep/wake cycles without demonstrating conscious awareness.

      Delete
    3. one of my associates looked it up and postulated that it is because guatemala HAS NO STANDARD for brain death.

      Delete
    4. Ken, that may be the explanation for Jonee's statement about the CHLA doctors declaring Israel's medical records from Guatemala "invalid." They weren't necessarily inaccurate or fraudulent, in terms of reporting what the doctors observed, and their opinions of those observations. They just weren't sufficient to "prove," by accepted USA standards, that Israel "wasn't really brain dead," which is what the family was attempting to do.

      Delete
  34. The doctor that Fonseca's attorneys wanted for an independent exam was none other than Alan Shewmon. They asked that CHLA grant him privileges and the use of their diagnostic facilities. CHLA objected to appointing Dr. Shewman because of his well known opposition to the concept of brain death. They argued that they should not be compelled to grant him privileges knowing that he rejects the widely accepted medical standards for diagnosing death based on neurological criteria, however, they offered to transfer Israel to a facility where Shewman did have admitting privileges.

    ReplyDelete
    Replies
    1. when I looked up Shewmon back when I first got sucked into the undeath saga, I noticed that despite rejecting the term "brain dead" he does believe a person in such condition is, for all practical purposes, dead, and will never recover.

      Delete
    2. He also doesn't campaign for the long term maintenance of people who suffer from "chronic brain death", however, that does not stop him from enabling deluded parents from doing so.

      Delete
    3. When I found out the family's "expert" of choice was Dr. Shewmon, I wondered why the family didn't just arrange the transfer to UCLA Hospital in the first place. Dr. Shewmon, knowing the situation, could have chosen to admit Israel as a live patient, just as Dr. Fellus did for Jahi, and the parents wouldn't have had to worry, at least for the short term, about having to deal with the possibility of withdrawal of somatic support.

      Delete
    4. I don't know whether he still has admitting privileges at UCLA since he's retired. He states in court documents that he remains "clinically active" whatever that means.

      Wouldn't it be quite a twist if he did have privileges and could easily help these families in a tangible way yet chooses not to involve his own hospital in these intractable controversies?

      Delete
    5. The declarations and references we've seen in the brain death dispute cases we've followed, and various publications he's authored, carry the name of "D. Alan Shewmon, MD" but he is also listed in medical directories as "Daniel A. Shewmon, MD." Here are two links with pictures.

      http://health.usnews.com/doctors/daniel-shewmon-445197

      http://neurology.ucla.edu/directory/affiliate-faculty/alanshewmon

      You may be right about his not choosing or (perhaps due to policies of the hospital boards and/or ethics committees) not being *able* to admit patients involved in these legally-disputed brain death cases to the hospitals with which he's affiliated.

      The CHLA appeal to the TRO states that though their own hospital's ethics policies prohibited them from allowing Dr. Shewmon to examine and treat Israel at *their* facility, they had expressed willingness to coordinate a transfer to any medical facility at which *he* had admitting privileges. But that didn't happen.

      Delete
    6. In her response to the motion to dissolve the TRO Fonseca failed to mention that CHLA made that offer. She claimed that CHLA did nothing to facilitate an independent exam.

      I doubt that any hospitals Shewmon may be affiliated with would be willing to get involved in these disputes either.

      CHLA also contacted 8 other hospitals about accepting Israel in transfer and none were interested. Saying in court documents that they did nothing to facilitate an independent exam was disingenuous to say the least.

      Delete
    7. Her argument that the court was obligated to order CHLA to allow Dr. Shewmon staff privileges at its facility never made any sense in the first place, IMHO. It was based on the fact that CHO had allowed a court-appointed independent doctor to examine Jahi McMath at its facility, per Judge Grillo's order.

      Well...yeah...but...the operative concept here is "court-appointed" (objective third party, seen by the court as properly qualified). Dr. Fisher hadn't been pre-selected by the family and attorneys, as *their* designated "expert witness" to support *their* arguments.

      Delete
  35. Another misleading article defaming CHLA while withholding information regarding the outright fraud perpetrated on his behalf.

    https://www.lifesitenews.com/opinion/israel-stinson-forcibly-removed-from-life-support

    I tried to post links to the court documents only to find I had been banned from commenting there. It appears the only criteria for banishment is trying to post actual facts.

    ReplyDelete
    Replies
    1. "Perpetrated on behalf of Israel Stinson" that is.

      Delete
    2. Ha! I just tried to post the link, but discovered I, too have been banned. The truth hurts, apparently.

      Delete
    3. I, too have been long since banned.

      that's "liesitenews" by the way.

      Delete
    4. And, as usual, more inaccurate reporting in this article...

      "Last January, in a unanimous decision, the Nevada Supreme Court held that the state’s brain death guidelines should be reexamined after a young woman was declared brain dead even though several EEGs showed that she had active brain waves. In that case, the woman died because the hospital refused to feed or treat her."

      Aden Hailu was hospitalized, and suffered the cardiac arrest that caused irreversible brain damage, on April 1. Again, the EEG reference...though some EEGs taken relatively soon after that weren't *totally* isoelectric, they certainly weren't normal. The family refused to allow any additional testing afterward, and the hospital didn't insist on it, since they'd already done the DDNC and were required to keep Aden on somatic support while the long court battle continued. The hospital didn't "refuse to treat her," since they were compelled by court order to continue treatments to stabilize as much as possible. Aden's heart finally stopped beating on its own in November, when nature eventually took its course. The hospital "treated and fed" for more than seven months! Admittedly, this didn't happen in the way the family wanted. As usual, they wanted the trach and gastric ostomies, and they wanted Aden to be "fed" Dr. Byrne's special recipe of hormone replacements and supplements, and kept asking the TRO to be extended while they tried (and failed) to find another hospital and doctor to do what they wanted. But suggesting that Aden's "death" was due to the hospital not providing care doesn't fairly represent the situation.

      Delete
  36. Welcome to the club. I was banned long ago.

    ReplyDelete
  37. I'd much rather be in the club that accepts science, reason and fact based analysis.

    I'm not at all surprised by the fraudulent court actions of The Life Legal Defense Foundation. They have been defending David Daleiden, the anti-choice activist. He created a fake identity with a counterfeit CA driver's license and set up a sham Biotech company just so he could infiltrate Planned Parenthood with a hidden camera and try to entrap them into "buying" fetal tissue by offering to pay $1,600 per sample. When that ruse failed he doctored the footage and then widely distributed it through the RTL network.

    Of course that led to a Congressional inquiry and FBI investigation into Planned Parenthood. After all the sound and fury and perhaps a touch of Karma, the only indictment was against Mr. Daleiden himself. This guy is portrayed as a hero by Alexandra Snyder.

    Apparently for groups such as hers the ends justify the means.

    ReplyDelete
  38. *lie legal defense fauxndation.

    ReplyDelete
  39. This FB site posted some links that explain why Dr. Zaldana accepted Israel. It appears he is the Guatemalan version of Paul Byrne. In one of the translated posts it says they sent Israel back to the US because he left a large bill.

    https://www.facebook.com/israelstinsonbraindead/

    ReplyDelete
    Replies
    1. Zaldana shared Israel's story on his FB page. He said they brought him to Guatemala because the US doctors wanted to remove his organs to donate.

      Delete
    2. A post from Dr. Zaldana on June 28 states that Israel was being transfered "today" to Roosevelt Hospital (the public hospital) because of the lack of financial resources at the del Pilar facility. (He also references the foundation that had allegedly promised to support the costs, then didn't come through).

      If Israel was indeed transferred on (or around) June 28, and didn't return to the USA until August 7, he would have been at Roosevelt Hospital more than a month before arriving at CHLA.

      Israel's mother states that the CHLA docs conferred with Dr. Zaldana about Israel's condition, as part of arranging the transfer. There's something wrong with *that* scenario too, since the actual transfer was from Roosevelt Hospital to CHLA, not from del Pilar, where Dr. Zaldana was based. Yet the only doctor statements presented by plaintiffs to support their "not brain dead" argument in the petition for the TRO are all from doctors at del Pilar. There is *no* reference made to Israel's stay at Roosevelt Hospital, or any statements included from doctors there.

      Based on the selective reporting, misinformation, disinformation, and outright fabrications we've seen from the family's attorneys, I think it's fair to assume that the reason for omitting this information may have been because the docs at Roosevelt Hospital had a different opinion of Israel's actual condition.

      We already knew resources were scarce in Guatemala (I posted a link a few days ago, Roosevelt has limited beds, only 12 in the ICU, so often can't even admit all the *citizens* who need care). If Israel had been at Roosevelt for a month after leaving del Pilar, it's very possible that the hospital staff may have given the family a deadline for termination of somatic support if they didn't transfer Israel out.

      Delete
    3. If you scroll down the comments under this post Dr. Zaldaña comments (twice) that Izrael was NOT moved to Roosevelt.

      Estimados amigos aparentemente alguién habló de los Estados Unidos y por el momento el niño no se trasladará al Roosevelt, les agradezco sus buenas intenciones y oraciones. Saludos

      Dear friends, apparently someone spoke to the United States and for the moment Israel will not be transferred to Roosevelt. We appreciate your good intentions and prayers. Greetings.

      Delete

    4. And if you visit Dr. Juan Pablo Zaldaña Facebook page click on the link at the top where it says "works at" Associacion de Medicos y Derechos Humanos
      ADMEHD This is a right to life group. Dr. Zaldaña and Dr. Byrne are two peas in a pod.


      https://www.facebook.com/Asociaci%C3%B3n-de-M%C3%A9dicos-por-los-Derechos-Humanos-AMEDEH-165927796855545/

      Delete
    5. I wonder about that because these comments were all from around June 28 when Israel was supposed to be moved to a facility in Philadelphia for technology dependent children. In early July they had an air ambulance booked and ready to go when the US doctor from Philly changed his mind.

      Maybe the transfer to Roosevelt happened after this arrangement fell through.

      Delete
    6. That seems possible. Del Pilar may have agreed to extend Israel's stay a few more days or a week, if they believed he could be transferred directly back to the USA within that reasonably short time period. But could this have continued for more than an additional *month* without that big donation that supposedly fell through, (which was *supposed* to pay all medical bills *and* pay for air transport)? There were numerous references on both GFM pages about the hospital demanding payment because the bills were piling up.

      Delete
  40. I wondered about that too since by the time Israel left Guatemala he had been at Roosevelt. You are probably right. Perhaps Roosevelt didn't have a "Paul Byrne" on staff to render a false diagnosis.
    Just another example of how they lied to get into CHLA. To accept a "lateral transfer" shouldn't CHLA have been consulting with doctors at Roosevelt, not a hospital he left almost a month prior?

    Another thing I wonder about is Jonee stating that Israel deteriorated only upon arriving at CHLA. The CHLA Pulmonary service actually denied admitting him into their home care program because he exhibited severe diffuse organ dysregulation which included absent electrolyte regulation and temperature dysregualtion. Jonee specifically said this had never happened while he was at del Pilar but as we know he wasn't transferred from there. It's a moot point now but I wonder if CHLA knew anything about Roosevelt. It would be a good idea to get a copy of Israel's Roosevelt medical records in the event that Jonee decides to sue CHLA.

    ReplyDelete
    Replies
    1. Exactly. A lateral transfer would have involved doctors at the patient's *current* hospital consulting with doctors at the *destination* hospital, to ensure a smooth and informed transition. Information that's already more than a month old wouldn't be considered current and relevant for a medically-fragile patient.

      I'm thinking that what Jonee described as a "deterioration" in Israel's condition may have happened *prior* to the arrival at CHLA. What she might have perceived as "improvement" in his condition during the time at del Pilar may have been due to the administration of hormone supplement medications that *did,* to a degree, regulate many of the body processes that were no longer managed by the destroyed brain. It's likely that Dr. Zaldana used Dr. Byrne's special recipe, or something similar, of synthetic hormones and other supplements to support somatic functions. Remember that we also saw reports from both Atty. Dolan and Jahi's family that referenced "how much better" she was doing once she was receiving "the right medications and nutrition" in the NJ hospital.

      When Israel was transferred from del Pilar to Roosevelt at end of June or whenever, surely his chart and list of medication instructions went with him. But once the Roosevelt staff had a chance to really observe and assess the situation, they may have realized that there was no chance of real "recovery" happening, and determined that this somatic maintenance routine was futile medical care. So, maybe they eliminated the hormones and other supplements, went back to basic vent and hydration support, and told the family there was no further treatment they would do. This would explain Israel's body being in a much less stable condition upon arrival at CHLA.

      Delete
    2. http://www.eece.wustl.edu/aboutthedepartment/Pages/news-story.aspx?news=7471&source=admin

      Was reading online about the Roosevelt Hospital in Guatemala and found this story. Dated 2013, but I doubt much has changed.
      Mary

      Delete
    3. Yes, I recall Jonee saying that they were ready to come back to the states because Israel was so much better and there was no further treatment that the foreign hospital could provide.

      I can see where she might have selectively heard "no further treatment is necessary" instead of "further treatment is futile".

      Thus is all so sad. Did you get a chance to read all of the medical records that Professor Pope posted? In the Palliative Care consult regarding patient history it stated:

      "30 month old boy taken to an outside hospital with status asthmaticus. He has a history of asthma and poor compliance with therapies."

      My daughter was diagnosed with asthma at age 2 so I know how quickly things can get serious. Thankfully she's a healthy adult now and pretty much outgrew the asthma although it was quite bad for most of her childhood. She had many allergies that acted as triggers and I remember just getting rid of all the stuffed animals, carpeting and upholstered furniture. I even bought a Rainbow vacuum cleaner because it doesn't discharge dust back into the air. We had to find homes for our dog and cat because she was so allergic to pet dander.

      Now she has two rescue dogs and no more problems outside of a few seasonal allergies. It can be managed if one is vigilant and follows all medical recommendations.

      Delete
    4. It's hard to imagine how a hospital with such limited resources, both in terms of actual bed space and current/working equipment, could have justified keeping Israel (a non-citizen) in an ICU bed, hooked up to a ventilator, for even a *month.*

      Delete
    5. Didn't transfer from Roosevelt. Went from Del Pilar to CHLA. There was no deterioration because there was never clinical improvement. CHLA was misled.

      Delete
  41. Just a general observation that occurred to me, as we reflect on all of the various USA "medical experts" that bereaved families and their attorneys have called upon to support their legal actions in dispute of brain death...

    Whether it's Dr. Shewmon in CA, Dr. Byrne in OH, Dr. Prestigiacomo with the IBRF and Rutgers in NJ, or maybe some others I've forgotten for a moment, they have no problem submitting their declarations of opinion that Jahi/Aden/Mikey/Alex/Mirranda/Israel doesn't actually meet the medical criteria for brain death. Dr. Byrne even prescribes medications and writes orders for the hospitals at which the families want specific "treatments" to be administered. He and some others either urge the courts to prohibit apnea testing, or allege that the hospitals have caused further brain damage by already having done so.

    Yet *none* of these "experts" have stepped up to actually take these patients into their care, in terms of becoming the doctor of record who can admit a patient into a hospital within *his* professional affiliation, and provide the "treatment" that the family desires.

    As we've already speculated, this is likely due to policies at "their" affiliated hospitals. Administration of futile care is prohibited by ethics policies. Admission of those already declared dead is typically disallowed also, though we've seen two families conveniently neglect to mention this little detail. And, of course, if that little detail makes the person ineligible for either private insurance or Medicaid coverage, there's the financial concern.

    But IMHO, the medical opinion of a doctor who is either unwilling or unable to *personally* take responsibility for the administration of the care that he believes appropriate should not be considered by the court as justification for mandating *someone else* (other doctors and hospitals) to do so.

    It's somewhat encouraging to see that judges in recent cases have finally recognized that opinions expressed by Byrne and Shewmon are outside the realm of generally-accepted medical standards, so aren't objective. But if these doctors are going to continue to be involved in brain death dispute cases, in which a family's goal is to require "someone else" to take personal and financial responsibility for somatic support, I'd love to see a judge order one of them to step up and actually take *responsibility* for patient care.

    ReplyDelete
  42. Scarab, have you ever visited the FB page:

    https://www.facebook.com/israelstinsonbraindead/

    There is a man who has been commenting there who is the father of the little boy who drowned in Montana a couple of months ago. I believe Mary might have mentioned his case either here or on Professor Pope's blog. He has been willing to engage different points of view although he and his family are also being "helped" by Paul Byrne. The hospital his son is in has thus far been administering all of the therapies Byrne has recommended. I believe they are trying to get him into a LTC facility in Nebraska. This family has 6 other children to care for.

    I also would like to see the doctors who give these families false hope step up and do more than write declarations and come up with useless therapies.

    ReplyDelete
    Replies
    1. No it wasn't me that mentioned the little boy in Montana , though I saw it on the Israel Stinson case discussion FB page. I went to the fathers FB page and there is a picture of parents with Paul Byrne. This is another very religious family. I hope they are getting false hope from Dr. Byrne.
      Mary

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    2. I meant "not" getting false hope.
      Mary

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    3. Thanks for the info, I found the Clint Stone FB page. I was trying to follow the story through the posts and it looks like they've been to court once already to fight the hospital's plan to take Allen off the vent. A post from this evening mentions that hospital will now try to put the boy on a home vent and see if parents might be able to care for him at home, but parents aren't sure that is the best plan due to his other medical needs. Hospital name mentioned is St. Vincent. Is there any info available about the court case? Seems odd that a hospital would follow Dr. Byrne's plan unless it was ordered by the court.

      Delete
    4. That case must be in district court and that website is down or something. It would be city of Conrad, Pondera county.

      Delete
  43. I haven't been able to find any mention of the circumstances of this boy's drowning in local media. There's no court information either although he does name his attorney. I was under the Impression that the family blocked an apnea test but in comments posted on the Stinson page he said they did an apnea test after having his son on 50 mcg of Fentanyl for several days.

    ReplyDelete
    Replies
    1. Somewhere way back in the earlier comments after the Montana boy drowned, the father said that his MRA wasn't good and that he failed his first "brain test." I think there had been an apnea test, but the hospital wanted another one.

      Delete
    2. I did find one drowning article in Montana of a 6 year old child drowning. So sad about the cases we have talked about on here. I don't know if this boy though. Mary


      http://mtstandard.com/news/local/boy-rescued-from-delmoe-lake/article_30b00091-4cd3-52d9-8d3a-4e93ee430cad.html

      Delete
    3. Looking on a Montana map this lake isn't near Conrad where the stones live but then he is in a hospital in Billings that is far from Conrad as well. Mary

      Delete
    4. Thanks for the info Mary. This must be the same child. He was 6 at the time of the accident and it happened in late July. According to dad's FB he turned 7 in the hospital.

      Not a lot of info in the article but it looks like it took rescuers quite a while to reach him. It didn't say if anyone started CPR during the wait and the father doesn't go into any detail either on his FB page. It would appear this situation is similar to Alex Pierce in that delayed CPR had a lot to do with his condition.

      It said that many people were there at the time and the family is heavily involved with a church in which fellowship and gatherings are central.

      Delete
    5. That *is* the same child as in the article. Clint Stone's FB page has photos of the family camping there at the time in question. The hospital Allen was first taken to is in the same network as St. Vincent's, where he is now. Stone said earlier that they were waiting for a bed to open up at a facility in Omaha and Allen would transfer there. In the meantime, his doctors have been following Byrne's "protocol" for nutrients and corticosteroids. 16 hours ago, Stone posted the following on FB: "A few interesting developments today! We were informed by staff at the Hospital that they are going to try a home ventilator on Allen. If it proves to be successful they are going to try to transition us back home with Allen. We have mixed feelings about this. Part of us would be overjoyed to be back home in Conrad and able to watch over our son and treat him ourselves! We miss our home very much! However, we are concerned about Allen's condition, and if we are equipped to care for him in his present state. Pray for our wisdom during this, it's important that we do what is right for our son. He has come a long way despite some of the questionable things he's been treated with, and it is ultimately our goal to bring him home, but we are not sure if this is it or not."

      Delete
    6. Ranking high on the questionable treatment list would be Byrne's recommendations.

      These families say they want to care for their loved ones at home but unless that includes 24/7 nursing care I doubt they would seriously entertain such an arrangement.

      Delete
    7. Also high on the questionable treatment list is the Montana hospital's decision to do a trach and g-tube after the first apnea test and other tests in the protocol indicated he had likely suffered brain death. The father's reports show that those surgeries were done after they were told that the first tests indicated bad news, and a day or so before Byrne stepped in and convinced the family to block the scheduled second apnea test. Why would a hospital perform these procedures knowing that brain death was likely to have already occurred?

      Another point of note: the local news reports say the child was underwater for an unknown period of time before he was discovered, and from that point it took EMS an hour to reach the site. That alone indicates ths child's brain probably didn't stand a chance.

      Delete
    8. Where did you read the child was in the water for an unknown length of time? All I have been able to find is that one article.
      Mary

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    9. Allen's dad posted today on FB about the accident. The above article I posted on here is about little Allen.
      Mary

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    10. Hospitals have the right to refuse treatment for a brain dead patient, but if they do decide to continue treatment it is entirely up to them. It seems to be another strategy, give the parents what they want and send them home. Clint and his followers are all suspecting that this is just a move to save money and it wouldn't be best for Allen. It's unclear if they will accept the deal.

      Delete
    11. Chris, I wonder about that too. Aden and Israel's parents wanted to provide "care at home" also, but somatic maintenance for a brain-dead body isn't *just* tending to the vent and gastro feeding setup.

      Since Byrne appears to be more hands-on involved with Allen than he actually was with any of the others, I'm guessing that *he* has probably told them that Allen's condition might not be best served by home care. It's part of his "brain death is just a conspiracy, perpetrated to harvest organs and free up ICU beds" philosophy.

      Delete
    12. Of course this is an economical issue for the hospital! ICUs are not long term care facilities nor should families expect them to be just because they refuse to accept death.

      If they choose to keep a dead family member on somatic support indefinitely then they should learn how to care for them and free up the ICU bed for people who can be helped.

      These folks want someone else to do the work and pay for it as well.

      The father feels that the hospital owes them this care to atone for care he thinks was denied the first two weeks his son was there. He doesn't seem to recognize that the hospital was under no obligation to provide a tracheotomy and feeding tube. No court compelled them to do so. Instead of appreciating what the hospital did they attribute it to God as if he personally intervened.

      It looks like these folks home school their children. The father was bragging about how fast two of his young children ran the mile and how many push-ups they did. He read them a Bible verse about persevering for motivation. He expected them to keep going no matter how tired they got. If these are very young children this is a form of child abuse.

      Delete
    13. According to Allen's dad, he was put on a home respirator, but has had a couple of emergency issues with it. They think hospital rushing this. One follower asked what Dr. Byrne thought. Dad says Bryne said he should be back on other vent.
      I wonder if they did a blood flow test.
      Mary

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    14. Did you see Israel's mother's post? She told Mr. Stone that getting his son on a home vent was a HUGE accomplishment. He told her that they were "inspired" by what she did to Israel. If he is inspired by a woman who flew her dead son to a foreign country to avoid the inevitable then I doubt a blood flow study would influence any choices he makes. He isn't interested in medically sound decisions

      Delete
    15. There was an update on the GoFundMe page a couple hours ago saying they are getting everything together to bring Allen home. Apparently the home vent is working out now.

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    16. Such a sad story about this child. They were trying to get him into a place in Omaha but it must've fell through.
      Another case I follow is baby Knox. His parents have him at home on a vent. They post about how hard it is to take care of him. She talked about his recent MRI results and where his frontal lobe was, it's just fluid. He has no pons, and some brain tissue in the back. Still they say God has his plan and will help him.
      Mary

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    17. Mary, recent posts from Knox's parents report that the whole family has now traveled to Calfornia, where Knox is receiving more intensive hyperbaric oxygen treatments and will also receive stem cell therapy.

      The fact that Carl(Dad)expresses his deepest gratitude for all the donations that made this possible suggests that maybe insurance isn't paying the costs, since these might be considered "alternative" treatments for someone in Knox's condition. While both HBOT and stem cell therapy are known to be medically useful in *some* situations, we don't, as of yet, have good reason to assume that they can completely regenerate total sections of lost brain tissue. The fact that the family needed to travel to seek out these treatments suggests that Knox's "regular" doctors didn't believe that such procedures would be useful.

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    18. Forgot to add...the CA doctor with whom the Stines are consulting regarding Knox's therapies is Dr. Steenblock.

      Here's a bit of information about the California Osteopathic Medical Board's past opinion of his treatments:

      http://www.casewatch.org/board/med/steenblock/steenblock4.shtml

      Among the litany of complaints from the Board, this one best summarizes my fear that Knox's parents are dealing with a quack...

      "It is true that strokes are caused by lack of oxygen to the brain. However, there is no scientific evidence that increasing oxygen delivery to the brain after an acute episode is over can stimulate cells to regenerate."

      Delete
    19. Hi Scarab, thanks for that link. I have never posted on this family's page but I did today with that link you posted. Felt it was important to let them have this information.
      Parents seem want to this alternative treatments even though doctors tell them there is no hope.
      Mary

      Delete
    20. Well I tried. One person posted they read the article I posted and thanked me for posting it but God led them to this doctor.
      Mary

      Delete
    21. Mary, there's probably nothing that any of *us* can do to help rescue these families from those who choose to give them unrealistic hopes. They're desperate in their denial, and hold fast to their hopes for a miracle. I'm sure that young Allen's parents probably think that Dr. Paul Byrne was *their* blessing sent from God, just as Knox's parents believe Dr. Steenblock will be the one to provide the "healing" that they've been unable to find for him through conventional medicine. :(

      Delete
  44. Israel's funeral will be held on Tuesday, according to a post by one of Jonee's friends on FB.

    ReplyDelete
  45. Story on Israel today. http://www.sacbee.com/news/local/health-and-medicine/article100885077.html

    ReplyDelete
    Replies
    1. Well written article I think.
      Mary

      Delete
  46. Excellent documentary about end-of-life issues:

    http://www.marketwatch.com/story/netflixs-latest-subject-is-a-reality-no-one-wants-to-talk-about-but-everyone-will-face-2016-09-13

    ReplyDelete
  47. somebody who isn't already banned from lie site news for telling the truth needs to call this latest screed out for what it is.

    https://www.lifesitenews.com/news/mothers-anguish-hospital-turned-off-life-support-again-familys-wishes

    ReplyDelete
    Replies
    1. Ken,

      I'm banned. What a piece of trash

      Delete
    2. I left a note and it was not very caustic but it may get banned anyway. I said it was sinful to print things that weren't true.

      Delete
    3. What more do you expect from a right wing, pro-life anti-science site.

      Delete
    4. I just posted on lifesite news Facebook page. Probably will be deleted and I will be banned.
      Mary

      Delete
    5. That article was saying Israel was grabbing their hands and breathing on his own while the vent was being turned off. Any doctor or nurse seeing a child grab at hands WOULD NOT turn the vent off.
      That mom I'd cpr but his color was changing. So crazy.
      Mary

      Delete
    6. Typo. Mom said she did cpr after vent shut off.
      Mary

      Delete
    7. More bad journalism, for sure, but as Doc said, we shouldn't expect anything different from *this* particular site. Remember that they've been maintaining that Israel was "alive" and that the hospital "killed" him by removing vent support.

      Mary, I totally agree...if any of the medical staff who'd been tending to Israel, not just on that last day, but at *any* time since he'd arrived at CHLA, had seen any *real* indications of actual responsiveness, or attempts to breathe on his own, they'd never have moved to terminate vent support.

      What continues to be so frustrating, not just in this article but in others I've read from mainstream media, is the continued reporting of Jonee's contention that she "doesn't understand why this happened." She maintains that the hospital shouldn't have agreed to accept Israel in the first place, if they just "intended to kill him" (as she's stated in other interviews). She maintains that the hospital was fully and completely aware of Israel's condition *before* he was admitted. We know this is *not* the case, per the hospital's statements submitted to the court.

      JMHO, but maybe the story *could* have ended differently if indeed the family and their legal team had actually been able to hold up *their* end of the original plan.

      The hospital was supposed to be just a brief stopover to facilitate setting up care at home or a LTC facility. If the family had been able to accomplish this within a few days or even a week, *maybe* it would have worked. But as we (and the CHLA staff) soon learned, there *was* no "plan" in place...the family was still trying to raise money and figure all this out. As they all learned very quickly, it's just not that easy to find, and fund, medical services for a patient already determined to be legally dead due to *irrecoverable* brain damage. Can't blame the hospital for not wanting to be stuck expending their ICU resources for futile care for an *indefinite* period of time.

      Delete
    8. what would have changed the story is if the family had been compliant with Israel's asthma needs.

      Delete
    9. The father of the little boy who drowned in Montana has posted a request on his Facebook page for an RN or LVN to assist them with care so they can bring their son home.

      He recently posted a video of the vent monitor which he believed showed his son taking two independent breaths 38 seconds apart. He then alleged that the respiratory therapist came in and adjusted the setting to prevent his son from breathing on his own.

      This seems to be a common issue the medical professionals have to deal regarding the families that don't accept a brain dead diagnosis. Everything the doctors do is suspect and no one can convince these people that they are not actively trying to "kill" their children.

      If families are so wary of doctors then they should remove their loved ones from that setting. Instead they expect excellent care from the very providers they malign on social media and in the news.

      Delete
    10. @ Ken - Of course you're absolutely right. We don't know *all* the details of Israel's challenges with asthma, but we do know that parents were failing to follow medical advice to the point of hospital staff alerting CPS. And, the parents were warned that if they continued to do so, there was a very good chance that a subsequent attack could be fatal.

      Delete
    11. @ Anon. 16:31 - There's more info in the comments about Allen's "vent adjustment." One person explained that what the family was perceiving as Allen taking breaths on his own was actually auto-triggering of the vent, and posted a link to explain. Then another relative responded by saying "that was not the case," another RT had since adjusted it back to the previous setting, and they were seeing Allen's chest moving again.

      We'd heard the same kind of reports in the past from Israel's mother, about occasionally taking breaths without vent support. Yet, obviously, he had no *real* ability to breathe on his own once the vent was removed.

      IMHO, these families in denial see what they want to see. A slight ventilator malfunction is interpreted as independent breathing, a spinal reflex movement that *maybe* coincides with some other stimulus looks like responsiveness, and such. So, they interpret any attempt to explain these things scientifically as a "death sentence" for the child.

      Delete
    12. Clint Stone, Allen's stepfather, has posted on FB that they are looking for RNs or LVNs to provide homecare. He says that once they have put together a "team" they will be taking him home. He hasn't posted anything about Allen's status for a few days. I believe this coming week is when the family was to come before the judge again. I'm sure the hospital will be relieved to get the ICU bed back. St. Vincent's is in the midst of a fund-raising campaign and providing futile care for this child is costing upwards of $10K per day if Mirranda Lawson's documented bills are anything to go by.

      Delete
    13. St. Vincent's has already gone above and beyond in their dealings with the Stone family. They provided the tracheostomy and gastrostomy willingly without being compelled to do so by the court. That is really all they can do since we know their is no treatment to restore a dead brain. They have prepared Allen's body for long term care, futile as it may be, and a hospital is not the proper venue to provide such care.

      Delete
    14. I really need to create an account so I can edit, used their instead of there, oops.

      Delete
  48. The family of Mirranda Grace Lawson has now filed an appeal in the Virginia Supreme Court asking that the court continue blocking VCU from performing the apnea test.

    http://www.richmond.com/news/latest-news-ap/article_4a17ddeb-3852-5765-be14-59a3b15dba9d.html

    ReplyDelete
    Replies
    1. hen maybe it is time for the family to take over care. AND responsibility.

      Delete

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