The Story of Jahi Continues

JustBeachyNurse, LPN · Dec 30, 2014

The heart does not require the brain to be functional for it to beat as long as it has the right electrolyte (K+/Na+) cocktail and oxygenation a heart will beat even extracoporeal. There are a multitude of you tube videos demonstrating the same. A kidney will function with hydration and exogenous desmopressin and electrolytes as well as adequate perfusion.

The mother has shown the "natural" hormones and vitamins she's been administering via GT and topically posting freely and publicly online about the cost. These can be assisting the body with the substances and hormones no longer produced endogenously due to a defunct brain stem and lack of pituitary. (Lack of pituitary response/function was demonstrated and documented extensively last December 2013)

The link above regarding the mother keeping her 4 year old on somatic support until his 20's is a prime example of how a body can be on somatic support for nearly two decades with only a calcified unidentifiable mass in the cranial vault. That child also showed some signs of puberty though at 4, was not at the cusp of puberty like this innocent, young teen.

The saddest part is the desecration of the memory of this young girl who by all reports was a beautiful, kind shy young lady who would be mortified by the circus perpetuated by her uncle and his attorney. Most of us just want this child's body to rest in peace with her long departed soul and her mother to let go and grieve despite her denial and guilt she has encapsulated for over a year. Plus her siblings desperately need their mother and to move on, and closure and time to grieve their sister's life memory.

Esme12, ASN, BSN, RN · Dec 30, 2014

Two doctors wouldn't see this MRI the same way, OC. And NO doctor would lower himself to form an opinion from one slice image out of hundreds as seen on Youtube.

If one slice showed 98% of brain structures are severely damaged/absent/deteriorated/decayed...all other views will show it as well.

Esme12, ASN, BSN, RN · Dec 30, 2014

No, ironically I am carefully avoiding 'making things up' and asking those that ARE if these assumptions are consistent with the known facts.
From Management of the Brain Dead, Heart-Beating Donor;
This first 'hit' on Google re: brain death and multi organ failure is more or less my current understanding. It is basic human physiology from nursing school.
Obviously some structures survived the massive assault in Jahi's brain, or she would have rapidly become unstable with cardiac arrest while ventilated. When you say 'brain function' I have no idea what you mean, could you mean consciousness? I don't think medical science has gotten there yet. When I say brain function, I'm referring to specific functional areas, whatever they are, as evidenced by Jahi's 'survival' to date. Something in there is working or she'd have been buried long ago.

In the presence of a healthy heart...it can, and will, continue to function as long as it is fed "nutrients" and oxygen. If you read carefully the article doesn't use terms like always and absolutely

brain death is often (not always) associated with marked physiological instability, which, if not managed, can (not does) lead to deterioration in organ function

it points to the fact that...

There is increasing evidence that moderation of these pathophysiological changes by active management in Intensive Care maintains organ function

However it does not change the overall diagnosis of brain death nor ensure regeneration of lost brain function.

Gooselady, BSN, RN · Dec 31, 2014

I said: Obviously some structures survived the massive assault in Jahi's brain, or she would have rapidly become unstable with cardiac arrest while ventilated. When you say 'brain function' I have no idea what you mean, could you mean consciousness? I don't think medical science has gotten there yet. When I say brain function, I'm referring to specific functional areas, whatever they are, as evidenced by Jahi's 'survival' to date. Something in there is working or she'd have been buried long ago.

Horseshoe said: Again, that is PATENTLY FALSE. Absence of multi organ failure is NOT evidence that brain death has not occurred. The brain interacts in various ways with optimal organ function, but a dead brain does not translate automatically into multi organ failure in any specific time frame if the heart function is maintained. And no, when I say "brain function" I do not mean consciousness. A dead brain has NO function whatsoever.

One CANNOT state that because a patient's organs have not failed while on mechanical ventilation that this is any indication whatsoever that a diagnosis of brain death is wrong. Nor does it indicate that "something in there is working." How you are getting that from the information you provided is beyond me.

As to your first point: The authors of the article simply state that overall physiologic functioning of the organism depends to a significant degree on intact brain structures. In the absence of certain intact structures, physiological function will fail. I basically repeated that in my quote.

There are people with intact intelligence and successful lives who were incidentally discovered to have single digit percentages of recognizable brain tissue. I read about those last night after the grandbaby fell asleep. The brain, even nonhuman brains, are in a lot of ways still mysterious, we have decent theories but I've made no claim of any absolutes FACTS and neither has modern medicine.

Since you bring up the veracity of the 5 neurosurgeon's brain death diagnosis (which I haven't addressed specifically), even the neurologists who've since been interviewed admit there's a lot they don't know yet about the brain. The way NEW things are discovered is often in the context of a human subject NOT displaying the expected symptoms, and then the study of why they did not follow the predicted pattern.

A year ago, it was predicted that Jahi would die on the ventilator, after her systems failed and stopped her heart. The article I linked to is about what happens to the organ systems of brain dead potential donors, how the organs themselves, in the absence of CNS regulation, will deteriorate and lead to cardiac arrest in spite of ventilation and medical life support.

Last I heard, Jahi is in a home care situation, rather than in an ICU. The differences in the level of support available are obvious. A critical care nurse would be more familiar than us about how pre-donors are medically managed with hormones, for instance, to replace brain dead areas like the thalamus et al. It SOUNDS touch and go, and something done over the short term until the person becomes the donor.

When Jahi was discharged from Oakland Children's, she wasn't even getting enteral feedings, she was still intubated, and per some of the threads here and articles, she was no longer receiving the kind of care given to a future organ donor. THIS is perhaps why all the hyperbole of Jahi 'rotting in the bed' I read on this forum and others came from.

Except that didn't happen. Some very persistent patches of brain remained functional, obviously. Or regained their function as the plasticity of brain tissue is well known to do, especially in children. This is not EVIDENCE that Jahi is not 'brain dead' or that she is 'alive'. That's for the non-medical public to dispute, we know better than that as nurses. We KNOW more than that about brain physiology. What we DON'T know is what those five neurologists conclude NOW that Jahi has not died when they predicted she would, ventilated or not.

This is just open minded inquiry, on my part. This lack of information is something we ALL share. This lack of information is the issue. We don't know. It's uncomfortable to not have cut and dried answers. Noticing these discrepancies is neither agreeing with you or disagreeing with you. If that's your take away, own it. The same for whatever 'logic' Scaredsilly uses to determine my IQ, that's on you. When people do not immediately recognize your opinion as fact, it's not necessarily because their intelligence is sub-par. That attitude must get you a lot of flack. We're in this together, in this lack of information. So far, what y'all have used for 'evidence' to support your opinion has caused me to have more questions than ever but doesn't really shed light on where you are coming from.

If it does boil down to questioning my intelligence or experience AGAIN, maybe you just don't have any further information, either. It puts us all in the same boat :)

scaredsilly, BSN, RN · Dec 31, 2014

Gooselady,

I never questioned your IQ, I questioned your education because there is absolutely no trained medical professional that I know of who doesn't understand these basic concepts/ Brain death is NOT recoverable, and it is not a matter of speculation. Yes, we DO know what at least one of the neurologists from a year ago thinks now. Paul Fischer, MD, a board certified pediatric neurologists wrote to the court in October when the scamfam filed a motion to declare her alive. He concurred with everything that he said a year ago and maintains she is dead. Google it. While you are at it, you may want to read his exam of her a year ago.

No, neurologists do NOT say that they don't understand brain death. Sure, there are things that are unknown, but the difference between life and death is specific and they DO know about that. They also know that a dead brain doesn't come back to life.

I think Esme and Justbeachy nurse proved that you need zero brain function for organ maintenance. They provided indisputable proof that your argument is not valid.

I doubt we will ever find out why Jahi was moved to a private home (if she was ever in an ICU-which is something else we don't know) but the general consensus is that no ICU is going to provide indefinite free care for a corpse. Remember, the family claims to be destitute and you cannot get health insurance for a dead person, nor are hospitals legally liable to provide care for corpses.

Gooselady, BSN, RN · Dec 31, 2014

I think Esme and Justbeachy nurse proved that you need zero brain function for organ maintenance. They provided indisputable proof that your argument is not valid.

They did? I understand your loyalty to them but their opinions and convictions prove nothing to anyone. And definitely, no offense meant. I will look further into Dr Fischer's input, though, thanks for that. If it's what you say it is, it will make an interesting book end to what's next.

A real wrench in the gears of this giant bunch of nonsense: Declaration of D. Alan Shewmon MD

It's the sworn statement by a ped neurologist who reviewed the medical records, including the recent MRI, and spoke with the doc from Cuba (who was among the 'international experts' Doran the lawyer collected recently). He did not examine Jahi personally, which would have given his statement more oomph. But personal assessment in person isn't always REQUIRED to make a determination. I can't remember the site where I read it (I'll look for it) but not even all five of the original neuros who determined brain death personally assessed Jahi, but examined her records and the test results.

Since early October, there's been some recalibration of the medical consensus about Jahi. Considering in the same google search I got news story hits going into gruesome detail about how Jahi's body will rot and liquefy, the compare and contrast is impossible to explain away.

And for the record, which I've said many times, I don't have the knowledge base to declare one way or another. Again, I'm exercising an open mind which includes all relevant information available.

What I'm surprised others don't 'see' is that there may be new particulars that need consideration in the current model of brain death we are using and that is not my idea. I got that right off of one of those articles I've read, it's common sense.

Once the catastrophic swelling goes down, the dead parts liquify or calcify, whatever is not quite dead yet will 'heal' as the body does, and some function will return, however irregularly. That is clearly what happened to Jahi. Her cerebral cortex looks fairly intact, while the mid brain, pons, brain stem is . . . well, not there. This case is kind of unprecedented.

Gooselady, BSN, RN · Dec 31, 2014

For the sake of both sides here's Fisher's sworn statement released in response: http://www.thaddeuspope.com/images/Fisher_letter_and_Objection_to_Fisher.pdf

Dr Fisher runs down the list of tests to determine brain death and states, correctly, his conclusion has not changed because these tests were not performed (apnea test, blood flow studies and EEG properly conducted and read) with different results than the first time.

The take away for me is that brain death is an evolving science, though we've done most of the work already. So Jahi has a functioning pituitary? Does that means she's not brain dead? That's a silly question, when you get down to it. Even the family and Doran or whatever he's called knew enough to withdraw their request in California to reverse the incomplete death certificate (incomplete as the autopsy has yet to be done). Their first attempt at this was shot down and died before it hit the floor.

Anyway my reason to join in this thread started out being about all the emotionalism from nurses here, the anger and rage especially. The other folks who don't buy into the emotionalism have left this subject long ago :) . Might have had their intelligence or nursing experience questioned when no evidence for the accusations could be produced? Lots of discussions devolve into ad hominem 'logic' at that point (well you must be _______ if you don't see ______") and this one is no different.

I guess it boils down to what the individual considers 'evidence' to be. There is not a consensus on this thread about what factual evidence IS. Or what 'proof' means. That's OK, we aren't lawyers or judges. What the general public assumes proof or evidence to be is incomplete and distorted by the media and lack of critical thinking skills. Oh yes, and emotionalism.

I appreciate those who've questioned whether or not I'm brain dead to not 'get' this, I'll be the final judge of that, but you've made good points in defense of the original situation. But different information has come forward. It does NOT change the sad fact that this family is in massive denial, seeking to further burden tax payers, and Jahi's continued existence is a living hell if any of her awareness has returned. It doesn't mean we need to change our criteria for brain death. But it has come forward, the unexpected has happened, that this kids' body is still chugging along in spite of predictions of rot and liquification. What's to be learned from this? Aren't nurses also educators of the public? We should be up to standard here. Whatever that is, thinking with our brains and not our disgust and outrage which is still very understandable. Disgust and outrage are our personal opinions, but don't we owe the public a professional open mindedness?

scaredsilly, BSN, RN · Dec 31, 2014

Dr. Shewmon as well as the Cuban quack have both been discredited. Shewmon is a complete disbeliever that there is any such thing as brain death, and he made the total erroneous statement that a girl cannot menstruate without a brain,That is patently NOT true! he never examined her, yet he delared her alive? Total rubbish!! it is true that we don't know if she is menstruating or not, but if she, you don't need a functioning brain. Shewmon never examined her, he is going by heresay, therefore nothing he says carries any weight at all.

If you don't care to look at evidence and/or take the word of experienced board certified Drs who actually examined Jahi and have been trained to make the diagnosis, then try a bit of logic. Explain this: if anything that the scamfam claims was real, why havent they hauled Jahi to a legitimate board certified expert for tests and exams to prove what they say? Why no verifiable MRI or EEG? Not even something as simple as a corneal reflex check? Why do you suppose that is?

Here's another question. you claim to be a nurse of 23 years, that means you have worked with other nurses and zillions of Drs. Have you ever met a single reputable Dr that would diagnose ANYTHING for a stranger that they never examined? Or one that would accept unverified information from non medical people to do so? No reputable Dr is going to risk a license to do that. The people that are backing up the scamfam are about as reputable as my dog when it comes to diagnosing a patient they never met.

I still can't believe a nurse thinks this way. Unbelievable, just really unbelievable.

JustBeachyNurse, LPN · Dec 31, 2014

Where does it state she has a functioning pituitary other than a presumptuous comment by a physician that never saw nor examined her? The MRI indicates empty sella turcia (an obliterated pituitary gland). However pituitary hormones are exogenously replaced all the time whether intentional or not (hormones can be inadvertently administered in a variety of supplements, herbal remedies, homeopathic blends and even dietary foods. Such as exogenous estrogen from consuming large amounts of soy products).

I have distaste (not anger) towards the showboat attorney and glamour seeking uncle who pretended to be at his niece's bedside early last December but later admitted he was on vacation in South America.

Regardless of what state of denial or delusion her mother is in, (while I would not be so brazen and disregard the rights of the other children and families in the PICU ) she still clearly loves her daughter and may not always gave a censor for what she says or writes. It's sad that her denial is perpetuated by others clearly seeking fame whether the hairstylist in NY or her own brother. She did not want to believe the multitude of experienced pediatric specialist who declared and confirmed her daughter's brain death. Who wants to believe their child died? She went to court for an independent physician to examine her daughter, reluctantly the same conclusion was made and again the following October. In the media circus, perhaps she wanted a chance for a miracle. A reasonably healthy child clearly can be sustained on somatic support in the absence of any discernible brain structure or function for over a decade---this has already been established and published in medical literature.

Esme12, ASN, BSN, RN · Dec 31, 2014

They did? I understand your loyalty to them but their opinions and convictions prove nothing to anyone. And definitely, no offense meant. I will look further into Dr Fischer's input, though, thanks for that. If it's what you say it is, it will make an interesting book end to what's next.
A real wrench in the gears of this giant bunch of nonsense: Declaration of D. Alan Shewmon MD

I respect your opinion and yes this is a highly debated topic even amongst more intellectual and educated individuals than myself. However the article you keep referencing to as your proof that Jahi isn't consistent with the facts. As to your first point: The authors of the article simply state that

overall physiologic functioning of the organism depends to a significant degree on intact brain structures. In the absence of certain intact structures, physiological function will fail.

Is very clear that the catastrophic changes involved in brain death USUALLY (not always) lead to multisystem failure and cardiac arrest....again I quote

brain death is often associated with marked physiological instability, which, if not managed, can lead to deterioration in organ function

The key words here being Often, not always. and CAN, not will always lead to organ deterioration and death. Those are BIG exception words.

It's the sworn statement by a ped neurologist who reviewed the medical records, including the recent MRI, and spoke with the doc from Cuba (who was among the 'international experts' Doran the lawyer collected recently). He did not examine Jahi personally, which would have given his statement more oomph. But personal assessment in person isn't always REQUIRED to make a determination. I can't remember the site where I read it (I'll look for it) but not even all five of the original neuros who determined brain death personally assessed Jahi, but examined her records and the test results.

Yeah...that doctor from Cuba....not credible nor licensed. Like anything else...you can find someone somewhere you can pay to reflect your opinion. The Cuban "doctor" not a good credible source.

The other physician you mention is DR. SHEWMON. He is a long standing non believer of brain death

I don't like "brain death" so much as a term, myself, but it's just there, and everybody is used to using it. So I will use it for this..... since 1992 I've been an advocate that death is not neurological, and there have been various things that have supported my conviction about that: the series of prolonged survivors in this state which have been published and I'm sure you're familiar with, the evidence of somatic integration and holistic properties in many of these patients..... "...for the reductionist, the brain-dead body is a living 'humanoid organism' but no longer the body of a person... For those who accept an Aristotelian-Thomistic type of spiritual soul, some brain-dead bodies are indeed dead by virtue of supracritical multisystem damage, whereas others (with pathology relatively limited to the brain) are permanently comatose, severely disabled, still living human beings; in either case, death of the brain, per se, does not constitute human death."

2007...interesting...if not long...read...https://bioethicsarchive.georgetown.edu/pcbe/transcripts/nov07/session5.html

I get it...it is his personal opinion IS NOT in agreement with the rest of medical society...Ok....who's personal religious belief influences his opinion....I'm OK with that as well. He believes that if the heart is beating...there is no death.

It still doesn't change the fact that Jahi has suffered irreversible damage to her brain and vital functions that "living" would not be possible without mechanical ventilation and other supportive measures. I have posted before that it is entirely possible that after the initial insult to Jahi's brain that there has been a decrease of edema with a possible change in random brain function...however that does not implicate recovery.

She is they way she is going to be until her heart stops and/or sepsis takes over. What I do know...eventually Jahi's heart will stop beating and long before it would if she was ambulatory. I know that this is the best Jahi will ever be...for me this is about quantity of time....not quality of existence. It is not ok for me..... but if it is OK for her family. I'm ok with that.

I do have the knowledge base that tells me her injury is catastrophic and that she fulfills brain death criteria that, if I was her nurse, I would have no issue with removing the mechanical support.

Once the catastrophic swelling goes down, the dead parts liquify or calcify, whatever is not quite dead yet will 'heal' as the body does, and some function will return, however irregularly. That is clearly what happened to Jahi. Her cerebral cortex looks fairly intact, while the mid brain, pons, brain stem is . . . well, not there. This case is kind of unprecedented.

I am confused that you are able to come to a conclusion that there is a difference in Jah's status when you admit....

the mid brain, pons, brain stem is . . . well, not there.

You cannot "survive without a brain stem/pons/midbrain. It is well documented that what is damaged/dead will remain damaged/dead. That she has "stabilized" (for the lack of a better word) indicates only that the rapid deterioration has been avoided...probably all the way back in those first weeks after the incident when the court battle was raging to keep her heart beating because of litigation....now that the crisis has passed the bodily functions can continue for an undefined amount of time....Jahi is 14 with a healthy heart...give it food...it beats.

some function will return, however irregularly

Function...qualify function. For me personally yeah...stuff kind of works...would I want my child like this? No, I wouldn't. However her family has chosen a different path and I am ok with that...but there will be no miracle. She will not awaken and yes her functions will cease.

What I'm surprised others don't 'see' is that there may be new particulars that need consideration in the current model of brain death we are using and that is not my idea. I got that right off of one of those articles I've read, it's common sense.

I am actually ok with the current criteria for brain death...I think that there needs to be consistent application of the criteria and I think that people need to be cautious what they read when they have no knowledge base of critical care medicine....for every story I have read about the miracle awakenings.....it is the families interpretation (not medical fact) that they have risen from the dead.

Those families were approached by the staff about brain death in early presentation.....the seriousness of the injury is consistent with a series of events that may follow this type of injury...as testing begins there is an unexpected improvement of the injury and the process was stopped..."a miracle". These are ALL within hours/days of the initial injury....not a year later. Please do not bring up Terry Schaivo...she was not brain dead and was never declared brain dead.

malamud69, BSN, RN · Dec 31, 2014

Starting to remind me of "Frankenstein"....no..."Young" Frankenstein.

Gooselady, BSN, RN · Jan 1, 2015

To Esme12;

. However the article you keep referencing to as your proof that Jahi isn't consistent with the facts.

For the record I'm not claiming 'proof', honestly I'm not. I want to know the facts, too, and don't personally claim I have any, we all have the same material. As for the misuse of words like ALWAYS, NEVER etc, if I used those words I retract them! I am 100% on board with that angle :) If I used those words it was done carelessly and appreciate it being pointed out. Absolutes are in the mind, not on the ground or in the facts.

Thanks for quoting Dr Shewmon and explaining his background. There certainly is a context here that I was unaware of, a semi-religious one to boot. Apparently he is as 'mainstream' as the International Brain Institute docs. I was aware this group was 'radical' and unrecognized. I was not aware of Dr Shewmon's background, so his sworn testimony has taken a big hit in my mind. The trouble with these radical types is how they exploit emotions, which are naturally HIGH in Jahi's case, easily exploited. I resent that.

You and I are in agreement about the Jahi's prognosis. As for your next quote:

Function...qualify function. For me personally yeah...stuff kind of works...would I want my child like this? No, I wouldn't. However her family has chosen a different path and I am ok with that...but there will be no miracle. She will not awaken and yes her functions will cease.

I've been on board with that all along as well. Function is on a continuum, from 'stuff kind of works' to physiologic. I assumed that was implied. I've tried to be careful with my wording, in hopes of communicating that I am not insisting Jahi is alive and functioning and all that brain death stuff is wrong. If anything, my original question was about 'evidence' as it were about the family's behavior and the extreme negative emotionalism of some members here. It's my own fault for getting distracted and put on the spot as if I were defending Jahi's family and lawyer. I honestly am not. If Jahi were my daughter she'd be buried and I'd have decorated her grave on the 12th of December. It's been my opinion from my first hearing about this case until now.

My original concern was what looked like vicious personal attacks on the family made by nurses. And what if any information was available to backing those up. I got the answer to that pages ago -- Instagram, tweets, blogs, and opinion pieces. Going on and on as I have about the particulars of brain death has been educational if nothing else. What I've learned backs up my previous conclusion, that whatever 'life' Jahi is being forced to 'live' because of her family's wishes is not what I would do. It's not what I would support in any way as a professional or as a person. I am very clear about 'miracles' and in my 23 years have seen exactly one :) (a young woman's Burkitt's lymphoma, stage four, resistant to chemo and radiation, 'vanished' after she did some homeopathic/naturopathic thing when the doc sent her home on hospice).

To JustBeachy:

However pituitary hormones are exogenously replaced all the time whether intentional or not (hormones can be inadvertently administered in a variety of supplements, herbal remedies, homeopathic blends and even dietary foods. Such as exogenous estrogen from consuming large amounts of soy products).

Makes perfect sense to explain Jahi's 'menses' and god alone knows what she's getting in her Gtube. Thank you for that. Your last paragraph resonates with how I've looked at this whole mess. I am pretty horrified at the lengths this family has gone, but as a nurse live in a different world of facts and evidence-based interventions, whereas Jahi's mother et al don't live in a medically informed universe. The media up-plays 'miracles' (organ transplants being my biggest pet peeve), hospitals and corporations advertise your stage 4 lung cancer will be cured, just call for a free consult with our slick an' greasy salesperson I mean 'clinician'. I know how people think, I've sat by a patient waiting for him to code because the family sees a DNR as 'abandoning' their loved one, refusing to 'give them a chance'. I called the code and bagged him while the family literally freaked the hell out, as if he weren't dying for weeks in front of them. The whole hospital knew this was a 'slow code'. Actually, I've done this twice.

I can't outright condemn Jahi's family. I was wondering what made condemning this family an obvious thing to other nurses.