Tuesday, December 24, 2013

Jahi McMath

If you're looking for insults, you won't find them here.  Not this time.  This story is too sad, and I can't even bring myself to insult anyone involved, even if it's warranted.

My wife brought this story to my attention after a friend of hers told her about it.  It is incredibly tragic, and it makes me sad just thinking about it.  What makes it worse is how the family has handled (and is continuing to handle) their awful misfortune.  And what makes it worse still is how much misinformation is out there and how little the general public seems to understand the concept of death.

A 13-year old American girl named Jahi McMath went to a hospital in California for a routine adenotonsillectomy, uvulopalatopharyngoplasty, and resection of her inferior turbinates for treatment of her obstructive sleep apnea.  Shortly after surgery she began bleeding.  According to the family she continued to bleed so heavily that she eventually suffered cardiac arrest, and CPR was started.  Her heart eventually restarted, but her body apparently had been deprived of oxygen for too long for her brain tissue to survive.  An EEG done two days later confirmed everyone's worst fears - the little girl was brain dead.  Over the next 24 hours a total of five physicians, two associated with the hospital and three not, confirmed the diagnosis.

Doctors told the family the heartbreaking news, but the family, either choosing not to believe them or not understanding the concept of brain death (or both), did not allow the hospital to take her off life support.  Instead, they filed for a temporary restraining order from the court to continue life support.  A judge granted the restraining order, and the hospital was forced to continue providing care for the deceased girl.  She has been deceased now for 13 days, and yesterday the judge actually inexplicably extended the restraining order by another week while waiting for a sixth opinion.  Not surprisingly, the diagnosis of brain death was confirmed yet again today.

Brain death is defined as an irreversible absence of brain function.  Unlike all other tissue, the central nervous system (comprised of the brain, brainstem, and spinal cord) does not have the capacity to heal or regenerate.  Once it is dead, it stays dead.  As long as a brain dead patient is kept on a ventilator, the heart will still beat, the lungs will still function, the kidneys will still make urine, and muscle reflexes will still exist.  But without brain function, the person is gone.  Physiologically it is the same as cardiac death where the heart stops and all organs then fail.  "Brain dead" is physiologically (and legally) exactly the same as "dead".  And no court order can change that.

As a father, I can certainly understand how devastated the family is over the shocking, unexpected loss of an innocent little girl after what was supposed to be a routine surgery.  But after reading numerous articles about the story, it has become clear that the family does not understand the concept of brain death, nor does a large segment of the population.  "Despite what they say, she is alive. I can touch her, she is warm," her mother said.  "With air she lives, her heart beats, her kidneys produce urine, she is warm and soft."  The family staged a rally in front of the hospital, chanting "Keep Jahi alive!  Keep Jahi alive!"  There is a Facebook page (KeepJahiMcmathOnLifeSupport) with hundreds of comments by people who clearly don't understand that she is dead and are expecting her to wake up and walk out of the hospital.

No.  As unspeakably depressing as it is, she is not alive, and she has not been for almost two weeks.  She is warm and her kidneys function because her heart is pumping oxygenated blood through her.  Her blood is oxygenated because a machine is breathing for her.  But a beating heart does not equal life.   This is not the 15th century - we know that the heart is just a muscular pump, and it does not determine the person; the brain does.  And as sad as the situation is, the hospital obviously has no obligation to continue treating a deceased patient.  The family's lawyer said, "It is our position that no doctor determination can end a life without parental consent."  This is utter rubbish.  The doctors did not determine when her life ended - all they did is confirm her death using a battery of tests.

Reading comments on some of the articles is even more disheartening.  There are countless commenters who think the hospital is just trying to "pull the plug" and get rid of her.  Several have even suggested the hospital is trying to get rid of evidence of wrongdoing.  Many other commenters say that the girl should be kept on life support because "miracles" happen, and there are instances of people declared "brain dead" waking up.

I have been unable to find a single article in a reputable medical journal anywhere in the world that documents an actual brain-dead patient waking up.  I suspect that every instance, including those on organfacts.net and lifesitenews.com, involves confabulation and confusion about the diagnosis.  Many people equate brain death with a coma or a persistent vegetative state, but the three are not remotely the same.  People can wake up from a coma.  But brain death equals death.

Medical science has not advanced to where a deceased person can be brought back to life, no matter how many times we read "Frankenstein" and want it to be so.  The hospital has been more than accommodating to a distraught family, but "life support" is for the living.  As a father, I wish I could give this family a hug.  As a physician, I wish I could sit down with them and explain why Jahi will never wake up.  My heart goes out to them, but this grieving family needs to understand and let go, and their little girl needs to be laid to rest.

There is much more to this story, and it continues to evolve on a daily basis.  I will update this and continue posting as the situation changes.

55 comments:

  1. It's hard to let go, but you never want to drag it out, especially if there's no chance they will recover.

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    1. I must say myself the situation is sad,however the mom needs to let go. I buried my son almost 2years ago and he was a month old when he passed unexpectedly it was a surgery that went bad and unfortunately these things happen. My heart definitely goes out to the family and I pray for them to have strength and understanding in this tough time.

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  2. I have been reading the articles & I believe the mother does not want to face the fact that get daughter is gone. I can't bland her. No parent wants to bury their child.

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  3. The judge made a final verdict to remove her from the ventilators no later than 5 pm on Dec 30. RIP :(
    www.contracostatimes.com/news/ci_24787953/jahi-mcmath-neurologist-present-test-results-at-closed

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  4. Doc, I understand that the ventilator pumps oxygen into her lungs and what not, but if the heart is beating and kidneys making urine, don't they need more than oxygen to work? You can power a computer with power, but w/o an OS, it does nothing. Sure the oxygen from the ventilator powers her heart and all the other organs, but what tells how fast her heart can beat? Supposedly she is still warm according to a report. I'm not doubting the claims of the 5 doctors, but how does it work?

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    1. The heart rate is essentially reflex. It doesn't require the brain to function. Your computer analogy doesn't fit, unfortunately.

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    2. Not exactly. Muscle memory is essentially subconscious memory formation, motor memory. It is information stored in the brain.

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    3. So in theory you could remove her brain and nothing would change. Her kidneys, heart and lungs would still function thanks to the ventilator?
      Won't her body start to decompose even if on the ventilator?

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    4. No, the body only starts to decompose if the cells are deprived of oxygen and die. The ventilator is continuing to oxygenate her blood and her heart is continuing to pump that oxygenated blood.

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    5. Ahh, but if her actual brain was removed, there is absolutely no difference as it plays no role in anything. Correct?

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    6. Possibly, but that's unclear. The brain flow scans in brain dead patients show no blood flow to the brain, so the brain is physiologically absent. Theoretically it should be the same as physically absent.

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    7. So does this mean the brain will start (or has started) to decompose and the rest of her body remain intact as long as she is on a ventilator?

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    8. Okay, you claim, falsely, that the brain stem does not regulate heart rate. It does. The actual beating is triggered in the heart by the sinoatrial node, but the rate is controlled by the brain stem. and you make no sense when you claim there is no blood flow in the brain, but also no decomposition...

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    9. As far as decomposition is concerned, I don't think anyone really knows. People who are brain dead aren't kept on machines for extended periods of time like this. So maybe I'm wrong and the brain will decompose. I'll take the hit on that.

      But I never once said the brainstem doesn't regulate heartbeat. I said the heart doesn't require a brain to function. There is a very distinct and very large difference.

      You seem to be trying way too hard to discredit me. Why is that?

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    10. Doc, I've done some research and I've actually found that: http://www.ncbi.nlm.nih.gov/pubmed/16970850
      Is it possible, that Jahi's body would actually calcify the brain the prevent infection from the otherwise decomposing brain?

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    11. The decomposition issue is an interesting one but perhaps partially semantic. Normally we think of decomposition as the visible putrefaction of a body from bacteria etc. The brain is, I believe, separated from the body by a barrier and in this case inside a working body with a presumably largely functioning immune system. It's likely sterile in there so it won't decompose visibly.

      Cells can die, however, and I suppose they must do when cut off from oxygenated blood. Debris from dying cells also cause inflammation and cell death in the vicinity. A bunch of that must happen in a brain with no blood flow. That could be considered "decomposition" but perhaps doesn't mean that the rest of the body need be compromised.

      The link above is even more interesting because presumably in meningitis the brain is not sterile at death and even then the "decomposition" of the brain didn't stop the body functioning. I guess eventually the immune system beat the infection - just too late to save the patient.

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    12. Well, I actually wondered if the body couldn't use calcification as a measure against the infection (I dont have feeling the actual cause of the brain death must be necessarily relevant, be it meningitis or hypoxia). Like in lithopaedion...

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    13. There are so few cases like this, I really don't know if anyone knows the answer. And here's the next question - when her heart does finally stop, will they then allow an autopsy? And how will they arrange that, drive her to the coroner's office and ask nicely?

      Questions questions!

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  5. This intrigues me as we try to fill the void between life and death. I wonder if we could take a dead person and give them a heartbeat. If we could resurrect the dead, faith would cease to exist. We would either be certain, is there an afterlife or not? It would make for an extraordinary Twilight Zone episode.

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  6. I was listening to a report on this today. The mother said she would be a bad mother if she took her daughter off the ventilator.

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    1. I don't think she's a bad mother, just horribly misinformed. Her daughter has died, and she obviously doesn't understand and has not come to terms with it. It seems that her lawyer (and others) are giving her false information that Jahi has a chance to wake up. She does not.

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    2. She is not a bad mother and I don't think she's misinformed. I'm a mother who had to take a child off of life support and I can say with 100% certainty I will NEVER be able to do that again. It's agonizing and 6 1/2 years later I still have guilt.

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    3. I'm sorry that you had to go through that, but I'm afraid she is terribly misinformed. A total of 6 doctors have all confirmed that her brain has no blood flow. Once brain tissue dies, it is dead forever. No amount of time, faith, or prayer can change that.

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    4. Update: the family is trying to move her into a nursing home so they can keep her alive, since the hospital refuses to do so. One nursing home actually refused, but another offered. At least the girl feels nothing.

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  7. Isn't there more sense in donating her organs to anyone else, who's waiting for transplantation, than simply removing her from the ventilator? Just asking...

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    1. That would be a wonderful Christmas present for a number of families. However, since they were trying to get Dr. Paul Byrne to examine her, I doubt they believe in organ transplantation. Dr. Byrne is an outspoken opponent of brain death, and believes it is a myth propagated by proponents of organ transplantation.

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    2. Well, I've googled his webpage and the "life guardian foundation", to which he posted a link on his website. Are those people serious? Is he 1) insane, 2) evil or 3) total idiot?
      I can only hope, that if he'll some day need transplantation, the organ will be donated to someone, who actually isn't doing his best to screw as many lives as possible :-/

      One last question: If someone like Dr. Byrne will be found somewhere unconscious, in urgent need of transplantation, will he get his new organ, regardless the fact, that he himself has signed the "I don't wan't to donate" paper?

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    3. It doesn't work that way. To get an organ transplant you need to be on a list. For an urgent or emergent transplant, you would need to get patient or family consent. I would assume Dr. Byrne's family knows his stance on organ transplantation.

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  8. When I saw and read varies articles about what happened I almost cried. It's a tragic story but nothing can be done for her. The few articles I have seen where doctors thought a patient was brain dead but the patient was still alive the doctors discovered their mistake within hours not weeks. It should be noted that it was discovered in patients that wished to donate their organs at their death.

    Accepting the death of a loved one is hard. When my Gram died earlier this year it was so hard to say good bye. She had gone to visit my aunt two hours away and her health went down hill fast. She was in a hospital for about a week and doctors told her that she had little hope of recovery since her heart was beating at thirty percent capacity. She asked for her options and requested to be released into her daughter's care to die. I went to say good bye and it was the hardest thing I have done so far. I knew she wasn't coming home but I told her how my white cat was taking over her room and if she still wanted her room she should hurry back. Maybe I was trying to not talk about her dying but we knew; she didn't talk to us and the nurses helping my aunt said that she was in transition.

    I know that not everyone is religious but a I am and a woman that lost her daughter after three battles with cancer is. The woman had prayed twice before that the doctors would be able to find and remove the cancerous tumors and that the treatments would work. The third time it was terminal. She told a family member of another child cancer patient that yes it takes faith for a miracle but there has to be greater faith to accept that there will be no recovery and that their loved one will die.

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  9. Denial, anger, bargaining, depression, acceptance... I think they're still stuck at the "denial" stage :( this is such a sad story though

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  10. How did such a routine procedure go wrong?

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  12. Thank you for attempting to address the lack of/misinformation in this tragic case. It is heartbreaking and serves only to exacerbate the family's pain.

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  13. If there is no blood flow (the EEG showed that), this means oxygen is not reaching her brain thus it is decomposing, no? I can't imagine the gruesome horror of this and allowing her to rot if so :-(

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    1. I think alot of peeps would benefit from a anatomy class!
      EEG showed NO BRAIN WAVES!

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  14. In England the life support would already be off, at the end of the day the parents have no say what so ever if its believed what they want is not in the child's best interests.

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  15. Hospital court papers http://www.docstoc.com/docs/165734995/jahi1

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  16. Discussion on Public radio http://www.kqed.org/a/forum/R201312301000 "Defining Brain Death"

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  17. Redacted notes on lack of neurological activity by Stanford doctor http://media.nbcbayarea.com/documents/Fisher+-+Redacted+Rpt_1.pdf

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  18. Thank you for addressing the fact that she had a uvulopalatopharyngoplasty performed & not a 'routine' tonsillectomy as so many other media sources are reporting.

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  19. What could have caused the excessive bleeding after the surgery? There are no details due to privacy laws.

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  20. Uvulopalatopharyngoplasty, wow. And CPAP is so much more effective. This is sad in every way possible. It sounds like the parents just want the child to be alive. Such guilt and sadness and remorse over letting a child go is awful.

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  21. I don't think her organs would be any good. My little boy died in 2009 at the age of 2 years, 7 months after strangling. He was on life support and I can truly say the children's hospital did everything they could despite the fact that it was truly unlikely that he would recover. They didn't rush into "pulling the plug". They did a cat scan, EEG and various tests. His eyes were dead. As for decomposing, brown fluid leaked from Angel's nose, ears and into his diaper. I figured it was decomposition. His organs couldn't be donated because they already started breaking down. They were able to use his heart valves and corneas only. Another family in my grief support group couldn't donate any of her daughter's organs because they were no longer functioning -even though she also stayed on life support. I can't imagine it being a different situation for Jahi. Her body must be doing the same things.

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    1. According to Doc here (from what I understand), this isn't the case. She is brain dead, but JUST brain dead. That means she IS dead, but everything but her brain is potentially just fine. Since they still have her plugged in and since her heart is still beating, then I would presume all of her organs are being maintained. That's all they need AFAIK: oxygen (heart+lungs) and nutrition (the machines probably take care of this too).

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    2. Kathleen- my heart aches for you. I'm so sorry.

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  23. I've been following this story for the last week and can't stop reading all of the articles and comments.

    It's such a sad story and even sadder that there is such a large population of people who are either misinformed (due to lack of factual research) or are failing to understand basic science. They are all jumping on this bandwagon and giving this family additional false hope. I feel like the more people that keep supporting them the harder the family is going to fight... How can they be wrong if they have so much "support"? I even read a comment by one person asking why Jahi couldn’t just have a brain transplant…

    Can you imagine the precedent that would be set if the court system allows this to drag out even longer? Imagine how many families would insist their loved ones remain on machines in hopes that they will miraculously recover someday? Imagine the costs that would be incurred by hospitals, insurance companies, and the government?

    I think the fact that physicians and care facilities are not lining up and offering to care for her speak volumes about the prognosis. How can the family or close friends not see this?

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    1. "Can you imagine the precedent that would be set if the court system allows this to drag out even longer?"

      I am worried about that also. :( I heard the hospital could of taken her off the vent(before court order) but I guess they were trying to not rush the family....now it is crazy. The hospital is having a meeting with the family in the court.
      I hope the court does the right thing...and support the hospital.

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    2. Before the initial restraining order? I read somewhere that most of the time hospitals will give the family 2-3 days and usually they're ready at that point. This one hit 3 weeks today.

      I agree, I hope the court steps in as well. As sad as it is to lose a child, what's going on here is just not right on so many levels. I would never want my son kept on machine's like that. He deserves to rest peacefully and with dignity (as difficult as it may be for me).

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  24. Unspeakably sad situation here. Certainly the child has passed away, and it is time for a funeral. What can be said to a family that has no intention of accepting the demise of their beloved child, despite its occurrence? There is nothing that they'll listen to obviously. I hope that they are able to allow themselves acceptance soon. This is disturbing

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  25. I am a bit (a lot) confused about the Jahi vs Munoz (Texas pregnant woman) case. They are both brain dead, I get that. In Jahi's case it is being said that she is passing the lining of her bowels, so she is decomposing and presumably there is nothing to stop this from continuing. If this is the case, how is it possible the docs in Texas are going to keep Ms Munoz from decomposing long enough to have any chance of delivering a viable baby, when she was only 14 weeks pregnant when brain death was declared? How is one situation different from the other?

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  26. The way the world is today, I am losing trust in people, especially intelligent professional people. The good part of this is that it draws me closer to God in faith and trust.

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