Remember the Humanity of Jahi McMath

As in the case of Terri Schiavo, people with severe brain injuries are treated like second class citizens, often being denied the treatment, care, and love that their humanity demands

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Courtesy of McMath Family and Omari Sealey / AP

Jahi McMath

The tragic facts surrounding 13 year-old Jahi McMath are now well known. She underwent routine surgery at Children’s Hospital Oakland December 9 for removal of her tonsils and some other tissue to alleviate her sleep apnea. After surgery she was alert and sitting up in bed, chatting with her family. However, as her family watched, Jahi began bleeding profusely, the blood on her gown matching the pink popsicle she held in her hand. The bleeding went on for several hours before she went into cardiac arrest and was medically declared brain dead on December 12.

Ever since, Jahi’s family has been locked in a battle of attrition with Oakland Children’s: The hospital says she’s dead; her family says she’s severely brain-injured.

Oakland Children’s position is brutally cold: Because Jahi has been declared brain-dead, she is therefore completely dead, only staying warm via the life-giving oxygen being pumped into her system by a mechanical ventilator. The hospital leadership has taken every opportunity to make clear that they are following California’s legal definition of brain death to the letter. For the hospital, Jahi is a hollow mass of flesh devoid of meaning; the administration has refused to refer to her as a child of a loving family. Instead, they have said that she is a “dead body” and a “deceased person.” Hospital spokesman Sam Singer rubbed even more salt into the wound, noting that “no amount of hope, prayer, or medical procedures will bring her back.”

The hard-nosed corporate line is very simple: Jahi is a mere shell, bereft of humanity, and using up precious resources only because of the naïve and uninformed hopes of her loving but pesky family.

Unsurprisingly, Jahi’s family sees things differently. They watched a vibrant young teenager morph into a starkly silent child, her hopes and potential dashed by a relatively simple medical procedure. They have also made clear that despite her current condition, Jahi is still their beloved child, not some washed-up husk ready for disposal. They have also been clear that Jahi is perhaps not as “dead” as Oakland Children’s Hospital would have us all believe. Jahi’s mother and several family members report that Jahi has responded to familiar voices. They have made the case that at the very least Jahi’s medical condition should be given some time before a radical hospital decision deprives her of her life for good.

For the hospital, Jahi’s medical diagnosis is certain and final, a diagnosis they want to leverage to close the book on a public relations crisis that has already badly diminished the reputation of the facility.

It’s not that simple, however, because no medical diagnosis is absolute. The research literature is rife with clinically observed instances of patients outstripping their physicians’ dire predictions by months, years, and even decades.

And that includes diagnoses of brain death.

For example, in 2008 Zack Dunlap was declared brain-dead after an ATV accident based on exactly the same criterion offered in Jahi’s case: a PET scan revealed that he had no blood flowing to his brain. His body was prepared for organ harvesting, but alert family members were able to elicit behavioral signs that showed he was anything but brain dead. Forty-eight days later, Zack walked out of a rehab center and went home.

Colleen Burns was another example of how fallible a medical diagnosis of brain death can be. Admitted to a hospital in Syracuse, New York, after a drug overdose, she, like Zack Dunlap, was declared brain dead and prepared for organ harvesting. She woke up on the operating table shortly before the operation began, and was discharged shortly thereafter.

In Jahi’s case, late Friday afternoon, Alameda County Superior Judge Evelio Grillo brokered an agreement allowing for Jahi to be transferred with her ventilator to another facility where she will be cared for as a brain-injured, rather than a “dead” patient. Oakland Children’s was quick to stipulate that they would not be responsible for anything that befell Jahi during the move. One wonders why they are so adamant seeing that, for their purposes, Jahi is already a corpse.

One thing is abundantly clear: The McMath case presents a stark scenario of the medical community running rough-shod over the wishes of parents and other loved ones when it comes to needed and necessary medical treatment. In the trenches of medical futility warfare, cases like these are often overlooked. Our experience, similar to those of Jahi and her family, is that people with severe brain injuries are treated like second class citizens, often being denied the treatment, care, and love that their humanity demands.

In our current healthcare climate, bureaucratic medical decision-making by corporate-medico fiat is likely to increase, making it likely that we will increasingly lose the Zack Dunlaps and Colleen Burnses of the world.

Schindler is Executive Director of the Terri Schiavo Life & Hope Network. Mostert is a member of its Board of Directors.

104 comments
KimberlyTurner
KimberlyTurner

"The tragic facts surrounding 13 year-old Jahi McMath are now well known."



I stopped here because I knew by this, everything else in this article would be wrong. The facts are anything BUT well known. The only side we have heard from is the mother. 

CrayZeeKaylee
CrayZeeKaylee

Jahi did NOT have a ROUTINE TONSILLECTOMY. STOP LYING! Jahi also didn't lose weight, to treat her Sleep Apnea, instead of having an invasive surgery, and her MOM can be blamed for that. I also do NOT believe this child BLED FOR HOURS before she passed away. Is anything in your article true?

jxnmspro
jxnmspro

I hate to even bring this up, but could MICRA (the CA law limiting death payouts due to medical errors to $250,000) have anything to do with this case?  Apparently if Jahi dies due to the surgery, any monetary payout would be limited to $250,000; however, if she suffers brain injury the payout is limitless.  Probably another reason why the hospital was so eager to declare her dead, and, to be honest, it's probably a motive to her family to look for a bigger payout.

RobinMills
RobinMills

Please note that the authors of this article are from the Terri Schaivo Family.  Bobby's bio: After his graduation from LaSalle University with a Bachelor of Science degree in marketing, Bobby went on to obtain a degree in meteorology from Florida State University.  [NOT a medical doctor]

Mark Mostert, from Johannesburg, South Africa, completed his undergraduate degree from the Johannesburg College of Education, majoring in special education and biblical studies. His PhD is in special education. [Again, NOT a medical doctor).

This article is for one purpose and one purpose only and that is to perpetuate their own agenda.

FergusMason1
FergusMason1

"people with severe brain injuries are treated like second class citizens"

But Jahi doesn't have severe brain injuries. In fact by this point she doesn't have a brain. It turned to liquid and ran down into her chest cavity three weeks ago.

FergusMason1
FergusMason1

"After surgery she was alert and sitting up in bed, chatting with her family."

Yes, and there's the problem. She wasn't SUPPOSED to be chatting, was she? And her family knew that. It's about time people started listening to medical advice, and accepting the responsibility if they don't.

PaytonBlake
PaytonBlake

Bobby Schindler and Mark Mostert, if you're going to write about the "facts" of this case then actually check your facts before you write something like this.

olyve9202
olyve9202

Okay, as for all the cases listed above:  First of all Zack Dunlap began showing signs of life in just a little over 36 hours. And Madeleine Gauron awakened the next day. Lydia Paillard woke up in only 14 hours. Gloria Cruz awakened 3 days later. Lydia Paillard was MISTAKENLY declared brain dead - in fact, she was only in a coma. These cases are vastly different than that of Jahi's, in that they awakened a very short time after being declared "brain dead". Their bodies had not begun to deteriorate. Jahi has been gone for more than a month now.  Her body is decomposing which means they are providing "life" support to a cadaver. It's macabre - like a cheap horror film. I've lost all empathy for the family. Jahi has moved on from her body - her mother needs to move on, as well. It's so sad and undignified that her mother would allow her body to be treated in this manner.

AnitaNy
AnitaNy

Recent cases of people being declared brain dead, then recovering contradict what doctors and organ procurement groups having been telling the public since 1968."Brain dead is dead. There is no 'recovery,'" one organ procurement organization says on itswebsite. It's a familiar refrain, but one that savvy medical consumers would do well to investigate before agreeing to become organ donors.The "Dead" AwakenIn July, a woman diagnosed as "brain dead" did the supposedly impossible. Madeleine Gauron woke up. Transplant folks had already sought consent to harvest her organs, but fortunately for her, her family refused, demanding proof she was really dead.That case follows on the heels of a similar "miracle" in Australia in March. Doctors declared Gloria Cruz, 56, brain dead. She regained consciousness three days later.Lydia Paillard revived after a diagnosis of brain death in October. Sebastien Paillard was considering consenting to turning off his mother's ventilator at the doctor's recommendation when staff members noticed signs of brain activity in the "dead" woman.Three woman in a single year, first they were irrevocably dead, and then they weren't. Before them, there was Zack Dunlap.Zack Dunlap, Brain Dead or Living?Zack Dunlap was declared brain dead in 2008. Organ harvesters were at the ready and actually began the process, according to NeuroLogica. An impulsive decision by Dunlap's cousin to make a final check of his vital signs saved his life.After his ordeal, Dunlap remembered being declared brain dead and feeling "ticked off" at the doctor, he told the TODAY Show.But the hospital treating Dunlap insists he was really dead, according to the Toronto Star. Dr. Leo Mercer said there was no blood flow to Zack's brain, therefore, "He was dead.

FredOlent
FredOlent

So why is the majority of the nation bending over backwards to make comments in anger about the parents and towards others in favor of them for not letting Jahi go? Why do you all care so much rather than minding your own business and life? Furthermore, science rebukes itself all the time. One day eggs are good for us, another day they're not, the next day again they are good for us, and 6 years later they are not again. Why should I believe other people, instincts come first. Mistakes have been made in life all the time!

charlieb1488
charlieb1488

Why no mention that the family decided to suction the girl? There was much more to the procedure than your article describes. I donated money to the family for the stipulated reason (as the gofundme site clearly explained) of transporting Jahi to an out of state facility. I am going to report the family for fraud since my credit card was charged and there is no evidence my donation was used in the manner it was requested and given. This family is looking for a payday. 

KimberlyTurner
KimberlyTurner

I see a HUGE lawsuit in your future. What an idiot. 

FionaBeswick
FionaBeswick

Given there is no proper health care in the US, who pays? I know they have donations. But assuming they didnt. What then? Terri Schiavo was paid for by lawsuit money. What if the family had lost the suit? 

If your relative is in a persistent vegetative state and you have no cash, what happens?

JeremyLeis
JeremyLeis

"Schindler is Executive Director of the Terri Schiavo Life & Hope Network"

That explains that.....

princessass
princessass

Bobby Schindler is a despicable bottom feeder. He is a filthy liar and I hope the hospital sues him for libel!

ChrisSadler
ChrisSadler

She is *dead*.  Dead.... not living... dead.  How did these 2 get a platform to write.  What garbage.  The poor girl is dead and those involved now should be charged with indignities to a corpse.

Hollywooddeed
Hollywooddeed

Typical "pro-life" nonsense.  Life begins at conception, ends at birth and begins again at brain death.

ThePrayerAuthor
ThePrayerAuthor

This kind of thing happened to my daughter in the eighties when she only onlky 18 months old.  We advocated for life and won.  Thank God! Laura is now 27.

gotham77
gotham77

I probably should have followed my instincts and not continued reading. This column and its lies are revolting.


Zack Dunlap was not brain dead. Colleen Burns was not brain dead. There has NEVER been a case of anybody recovering from brain death. EVER. It has never happened in history and it will never happen because it is a medical impossibility. It's as likely as an amputated limb growing back. The authors disgrace themselves by lying about those two cases. They were misdiagnosed, they were never brain dead. There is no misdiagnosis in Jahi's case. SIX different doctors have all independently come to the same conclusion and they have used every means at their disposal to confirm it. She is dead and she is never coming back. There is no patient to treat. There is a cadaver. How dare you presume to tell the world that we must deny that she is dead as a litmus test to prove our compassion. How dare you.


I am utterly disgusted that the Terri Schiavo Foundation has involved itself in this. It's none of your business and you are morally repugnant for giving this family false hope. One of these days, the reality of their daughter's death is going to finally hit them, and it will be so much more painful than it had to be because of despicable people like you that have lied to them. Will you be there to help them then? No, of course not.


The Terri Schiavo Foundation is involved for one reason only: publicity. This helps your fundraising. YOU DISGUST ME.

gotham77
gotham77

The second sentence of this column is a lie. There was nothing even remotely "routine" about her surgery, it was highly complex and very risky. Should I even bother reading further? Does it get better or is it more lies?

velesot365
velesot365

She is just a shell. Sorry if people can't handle the truth.

ICURN
ICURN

Articles like this are so damaging to the public's understanding of what brain death is; it's sad that the authors' opinions are based on such poor research. A severe brain injury is not the same as brain death. Brain death is a very specific diagnosis that is final. In the two cases mentioned (Zack Dunlap and Colleen Burns), brain death testing was not done properly; these patients were never truly brain dead. NO truly brain dead patient has EVER recovered; it's not in the literature anywhere. Those two patients had extraordinary recoveries, but they were not brain dead. in Jahi McMath's case, she is certainly brain dead. FIVE different doctors (three chosen by the family themselves) have conducted examinations. Tests have been done above and beyond what traditional brain death testing requires. Speaking of brain death testing, the authors should have educated themselves on it, as a PET scan is certainly not part of it. Here's what's required in most states to declare brain death:


To even begin the testing, the patient must meet certain criteria: cannot be hypothermic (temp must be >36.2C where I work), must have an adequate systolic blood pressure and have no sedation or paralytics on board. Then a very detailed, specific physical examination ensues (with at least an attending level physician and a nurse at the bedside, and often much more people than that--of course the family can be at the bedside for the testing if they wish)…


Brainstem reflexes are tested. ALL of these conditions must be met to declare brain death:

1. No response to painful stimuli

2. Lack of midbrain function (no pupil reaction to light)

3. Lack of pontine function (no corneal reflex)

4. Lack of medullary/brain stem function (no cough or gag)

5. If the patient's condition permits (i.e. no c-spine injury, etc) the oculocephalic reflex will be tested: the patient's head will be turned rapidly 90 degrees to both sides. A brain dead patient's eyes won't move (normally there would be slow eye movement in the opposite direction of the head being turned).

6. No reaction to cold caloric testing: 50 mL of ice water is instilled into the patient's ear. A brain dead person's eyes will have no reaction (normally the eyes would dart to the side that water is being instilled into). 


Even if the patient meets these criteria, you're still not done. You still need to do the apnea test. First, you give the patient breaths with 100% oxygen via the ventilator and draw a blood gas to determine their pH, CO2 and O2 levels. Then you disconnect the patient from the ventilator and deliver 100% oxygen to the breathing tube by attaching an ambu bag (so the patient has an oxygen supply but is not being given artificial breaths).  Then you wait. Observation for spontaneous breaths is not enough; you must draw more blood gases while the patient is disconnected from the ventilator. A rise in CO2 to above 60 mmHg OR  a rise 20 mmHg above their baseline blood gas PLUS no spontaneous breaths being observed indicates a positive apnea test and brain death. If the patient is too unstable for the apnea test, then a transcranial doppler must be done instead (a test that checks for blood flow to the brain….a brain dead person has none).


Even if the patient meets ALL of this criteria, you STILL aren't done. The examination must be done twice, by two different attending level physicians, and must be done 12 hours apart for a patient between the ages of 1 and 18 (the interval is longer than that for patients less than 1, and can be shorter than that for patients older than 18). Confirmatory tests (EEG, transcranial doppler, etc) are optional for patients older than 1 years old. For term infants to 2 months old, 2 confirmatory tests are required. For 2 month olds to 1 year olds, 1 confirmatory test is required. The reasons for confirmatory tests in neonates and infants are that there's a relatively small number of brain dead neonates reported in the literature, and neonates' physiologic and cerebrovascular responses to brian injuries are different than that of older patients.



I included all of this information to impress upon everyone that brain death isn't some diagnosis that's just thrown around willy-nilly. As you can see, VERY specific and rigorous testing is required. In Jahi McMath's case, she received brain death testing from five different physicians, plus a slew of confirmatory tests. It is simply impossible that she is not brain dead, and impossible that she will recover. It's sad, but it's the facts.

CharlesMatthews
CharlesMatthews

 I am a father of 2 brain injured sons. Both of my sons surpassed what many doctors said they would be capable of. After 3 experiences of hospitalization for my youngest son, my experience is that many doctors and hospitals are disconnected with their patients care. I saw so many mistakes, blunders, incorrect diagnosis and outright lack of caring. Hospitals are a bureaucracy that can be uncaring and oversteps its authority..I know when...we were told a procedure would be done, with or without our permission, even though we had medical power of attorney!

 So then with so many blunders, so many mistakes, anything a doctor or hospital says should be questioned. Doctors are not God and are clearly fallible. Any doctor who will not listen to the patient and family is not a good doctor! The problem with brain injuries and  "brain dead" diagnosis is that the health industry has a monetary interest in quickly declaring death..hence the rush to deny treatment even if it would be barbaric and inhumane to do so. 

   I am amazed at how callous, and uncaring this society has become! May God have Mercy on us....the medical community won't!

KimberlyTurner
KimberlyTurner

@jxnmspro OF course. Don't you remember Uncle bringing that very thing up and making sure everyone knew that instead of going that route they can sue and get up to 30 Million?  lol

CatherineBaxter
CatherineBaxter

@FredOlent any idea whatsoever the costs of 24/7 medical care for this dead person? Insurance does not pay for medical care or storage for dead people. The coroner issued a death certificate. Does this ridiculous family look like they can afford the millions of dollars in care for this dead child? That leaves one resource..taxpayer. I resent like hell being forced to care for a dead kid. They are just waiting for the lawsuit. The child is dead, will start to smell and have her skin slough off. THEN can we bury her?

CrayZeeKaylee
CrayZeeKaylee

@charlieb1488 The family did indeed say the funding was to AIR EVAC her out of CHO. We now know she was DRIVEN TO HER MOM' HOUSE. I'd chargeback on my credit card if I was you as well.

gotham77
gotham77

@FionaBeswick Wouldn't someone in a PVS be considered severely disabled and qualify for Medicaid?

GregHorowitz
GregHorowitz

@princessass 


Bobby Schwindler has proven time and again he only cares for one thing; Bobby Schwindler.  If that means standing on the corpses of all these dead people, so be it.

charlieb1488
charlieb1488

@ThePrayerAuthor Your daughter was diagnosed as being brain dead by multiple doctors and a death certificate was issued?

overtcops
overtcops

@ThePrayerAuthor Nice how you mention God then lie all in the same post.  Where do you think people like that end up?  Laura was never brain dead... you on the other hand...

FredOlent
FredOlent

@gotham77 So, they were misdiagnosed you say ha? If those two people didn't fortunately wake up when they did, they were going to be cut up. They were diagnosed as brain dead, and God forbid that anybody should've questioned the doctors' diagnoses. :)

nhmom73
nhmom73

@gotham77 I am disgusted by the Schiavo family for getting into this as well. And I have always been on their side as far as Terri was concerned. That woman only needed a feeding tube. And showed coherency..I have yet to see any video proof of Jahi. That is because they don't want us to see the truth. A corpse that is in the stages of decomposition slowed by medical machinery. . The judge should have put a end to this circus and given this kids corpse some respect. Now I have seen it all .SMH...I wonder how long this will continue before the mother decides to declare her dead. 

BokChoy
BokChoy

@gotham77 Apparently the surgery was a second opinion.  The first doctor recommended standard treatment for the sleep apnea and dietary management for her obesity.  It will be interesting to hear all of the facts when the real truth comes out.

overtcops
overtcops

@CharlesMatthews Pst....  you would think that YOU of all people would understand the difference between brain injury and brain death.  Grow up ChuckMatt.  Your post is full of fallacious disconnected BS.  We perform brain death studies on patients all the time, THERE IS NO CHEATING THIS TEST YOU DOLT.  Stop spreading your inane nonsense.  I'm amazed that you can even type this horse crap out.

gotham77
gotham77

@CharlesMatthews This isn't about you and your sons. This case is nothing like theirs. Not at all. I'm sorry for what happened to you but SHAME ON YOU for using that as an excuse to come in here and talk nonsense. This poor girl is dead. She on not "brain injured" she is BRAIN DEAD and recovery is a medical impossibility. It's like hoping for an amputated limb to grow back. There have been instances of people being incorrectly diagnosed as brain dead, but this time SIX DIFFERENT DOCTORS have all come to the same conclusion and they have used every possible means at their disposal to confirm it. There is zero chance of them being wrong. What kind of recovery is possible from a brain injury is very difficult to determine, I'm not surprised doctors were wrong in your case...but brain death is much more black-and-white. There's no ambiguity here. She is gone and she's never coming back. Period.

You have accused medical professionals you don't even know of caring more about money than anything else. Shame on you. You have insisted that anybody who accepts that Jahi is dead forever is "callous and uncaring." Shame on you. Who do you think you are? You think that your own family's personal tragedies make it okay for you to say these things? Think again.

ICURN
ICURN

@CharlesMatthews Brain injuries and brain dead shouldn't even be in the same sentence. They are not even close to the same. Brain death is absolute, and if the testing is done in accordance with acceptable standards (see my previous comment), it's beyond reliable. How, exactly, do hospitals have a monetary interest in quickly declaring death? It's much more profitable to them to keep patients "alive" in the ICU, racking up thousands of dollars in bills per day. Jahi McMath's parents wanted a tracheostomy and g-tube for her…both operations that would've made CHO money…and they declined to do it. Because it is beyond unethical. 


It's unfortunate that there's so much confusion within the public on what brain death is. I'm very glad your sons have exceeded what doctors said they would do, but your sons were not brain dead. The difference between brain injuries and brain death is huge.

FionaBeswick
FionaBeswick

@bullrider @FionaBeswick I mean, no universal health care. That is what the rest of the world means by 'proper health care'. Care for all, paid for by a universal tax, so when you get sick you never need to fight an insurance company, or pay a whopping deductible or copay…or just get no care at all. I read an article from a community clinic recently describing how desperately poor people come in showing signs of possible liver cancer, but cannot get even a biopsy to find out. 

It's contemptible, as is having guns and the death penalty and having half the people in your absolutely atrocious jails be seriously mentally ill. And it seems like nobody cares. Its how you treat your least people, not your luckiest and richest, that determines how civilized you are. 

America really has a nerve shouting at China over human rights.

CatherineBaxter
CatherineBaxter

@gotham77 @FionaBeswick and she is not in a PVS either.she is DEAD. If the family had shown half as much care or their morbidly obese kid when she was alive, they could have put her fat self on a diet and made her exercise and the surgery would have been totally not necessary. But too bad, so sad, they did not put the fat kid on a diet and now she is unfortunately DEAD

FionaBeswick
FionaBeswick

@gotham77 @FionaBeswick I don't know because I'm not an American. Is that the case? If you're severely disabled you get Medicaid? Who would fill in the paperwork? But in this case, she isn't disabled. She's not resting. She's stone dead. 


You know, not to be flippant, but that's reminded me of the Dead Parrot sketch. "This parrot is No More. It has Ceased To Be. It has rung down the curtain and joined the choir invisible…This: Is An Ex-Parrot"

Pia
Pia

@gotham77

Who are you to call the poster a liar? Are you an MD? 

JoAnnaWhippsChapman
JoAnnaWhippsChapman

Terri Schiavo only needed a feeding tube?!! Terri was completely dependent on her care givers and required 24 hour care! Her autopsy showed that only her brain stem remained, the rest of her brain had died and liquified. She was left with only the most basic life functions.. She was blind, completely unaware of her surroundings, had no ability to feel emotions.. She had absolutely no quality of life.

gotham77
gotham77

@nhmom73 I was NEVER on their side, because this "foundation" represents her parents...and it wasn't her parents' decision to make. It was her husband's. He chose to end treatment and let nature take its course based on his assertion that she told him that's what she would have wanted, and without any reason to question his honesty it's nobody else's business to get involved...not even her parents'. When you get married, your parents cease to be your next of kin. Your spouse is now your next of kin, and it's the spouse's decision to make.

However, I completely agree with you about the important differences between the two cases. Terri Schiavo wasn't dead. Jahi McMath is. It is an obscenity to preserve a cadaver in this manner, the body should be buried with the dignity it deserves.

JoAnnaWhippsChapman
JoAnnaWhippsChapman

Michael Schiavo WAS Terri's legal guardian, not only because he was her husband but a Fl judge awarded him guardianship. Every guardianship petition filed by the Schindlers was DENIED. You bring up a very question.. Why didn't he file for divorce and relinquish guardianship? It would have made his life easier. Could it be because he made a promise to Terri to not allow her to live in a PVS indefinitely? He remained steadfast on that claim from the first time he petitioned to have her feeding tube removed. Did you know her marker is engraved with "I kept my promise"?

BokChoy
BokChoy

@gotham77@nhmom73 Terri Shaivo's parents were the proper guardians for her.  Michael Shaivo had entered into a common-law relationship with another woman, living with her as a couple, and fathering two children from the relationship. Why didn't he divorce her rather than just shack up with another woman and play house?


Terri Shaivo was not dead.  Jahi is.  The Shaivo Foundation has no interest in this case except to offer prayers and support to the family due to the death of their child.