Family wants to keep life support for girl brain dead after tonsil surgery #4

[MEN3C]

actual brain death should show a blank unlit brain though. I am talking about a specific scan that not all hospitals can even do, including some big ones, it takes a special MRI machine and is used only to show that someone in a vegetative state is actually alive, thinking and awake. It is very new, over the last couple of years and extremely expensive but its ripe for this sort of case. Traditional scans won't be of use as the family doesn't trust them but this scan would show once and for all that her brain is dead while if god forbid she actually is locked in would mean a quick correction of course by the hospital. Does anyone know the name of the scan and if CHO has a machine for it?

Edit found it. It is called an fMRI and as the article says will rewrite medical textbooks. It gives me the shivers how many vegetative people were probably awake and conscious an no one knew and still don't know

http://www.bbc.co.uk/news/health-20268044

If a brain perfusion scan is negative, what is the point of a fMRI??

 

[Softail]

Jahi McMath is not in a coma or vegetative state. She is brain dead. Terry Schiavo's case is no comparison. Apples and oranges.

Lack of brain activity separates Jahi McMath from other cases

"But very much in contrast to this case - sadly, tragically and horribly, Jahi McMath is not brain damaged. She's dead," Magnus said.

http://www.sfgate.com/health/article/Lack-of-brain-activity-separates-Jahi-McMath-from-5112290.php

 

[SilkySifaka]

If a brain perfusion scan is negative, what is the point of a fMRI??

To help the mom accept it, one more study to show her, one which she might understand emotionally better than the others because it directly investigates whether she can respond in any way even when looking that she can't. I believe she is brain dead but mom does not. Mom needs the treatment.

 

[jjenny]

True but the fmri shows them actually being able to answer questions directed to them and no one knows they are locked in until the fmri is doen which few hospitals have. Thats why people have been considered vegetative for decades. Imagine if they had the fmri when Terri's case was being considered. For all we know she was alive and conscious when discussion of removing life support was done. It is only the last couple of years the technology is there to weed out the locked in's.

I think mom might be more able to accept it if she sees her daughter can't answer questions or respond to the fmri.

Schiavo was alive when decision to remove life support was done. Schiavo was never braind dead, she was in PVS. The only life support she was on was the feeding tube.

 

[Donjeta]

True but the fmri shows them actually being able to answer questions directed to them and no one knows they are locked in until the fmri is doen which few hospitals have. Thats why people have been considered vegetative for decades. Imagine if they had the fmri when Terri's case was being considered. For all we know she was alive and conscious when discussion of removing life support was done. It is only the last couple of years the technology is there to weed out the locked in's.

I think mom might be more able to accept it if she sees her daughter can't answer questions or respond to the fmri.

It is a very valuable tool for sure although according to this article the popular press may have overestimated the breakthrough somewhat.
http://www.cardiff.ac.uk/jomec/jomecjournal/3-june2013/Kitzinger_Samuel_coma.pdf

Perhaps one of the doctors who cropped up last week to get some publicity can help her family to get her more scans if they feel that's what they need to trust the diagnosis.

 

[popsicle]

Like most of the posters here and on news sites, I also would like to know the truth of what has happened from the beginning. It's beyond frustrating trying to figure out truth from fiction in almost every aspect of this case. However, I do have to say that it really, really bothers me that there are millions of hate filled comments floating around the internet regarding this innocent 13 year old girl. Regardless of how this happened and how it has progressed to this point ... none of it was her fault.

I agree that Jahi probably won't be able to recover from this; but, at this point, it is just flat out wrong for the doctors, nurses, attorneys, all the way down to online posters to constantly refer to her as "the body", "the deceased", "the corpse", etc. Whether she really is brain dead or not she is still an innocent 13 year old little girl named JAHI. Is it really too much to ask that everyone continue to refer to her as Jahi instead of the hurtful titles I posted above? We all know the only reason she is being referred to by those titles is to hurt her family. It's extremely shameful that it started with the doctors and staff of CHO. Shameful!!!

I do not intend to insult anyone with this post, nor is it directed at any particular person; but, after following this case for weeks I just really needed to say that. May God Bless this little girl's soul ... wherever that may be. lease:

I just want to mention this one thing. A couple days ago while I was reading thru many articles, court filings etc. I found it stated in a medical-ethics article, I think, that it is not unusual for doctors to use such terms as deceased, dead, body etc with a family. This is to not confuse them nor encourage the believe that the patient is still alive. This is jmo because I would never be able to find that amongst everything I have read.

 

[jjenny]

Thanks donjeta. I do have a problem with one small part of what he says. Worrying about the moral distress that "the family" is putting on the providers. They are the doctors and have the moral duty to care for the patients family as well as the patient. Given Jahi cannot be helped, the family is still part of the group being cared for or should be. As i said in another post, it is not the mentally ill's job to worry about the doctors, it is the doctors to worry about the mentally ill. This is a tragedy all the way around but I assume the hospital is providing counseling to the doctors involved...and i would hope they are providing through another hospital to the family, as I doubt they would trust CHO's docs. But they should have made an arrangement to offer help with another institution.

JMO dont attack me

How can arrange any help with another institution? She is brain dead and legally dead. Insurance won't pay for her care. What institution is going to take in a legally dead patient?

 

[Herat]

It is a very valuable tool for sure although according to this article the popular press may have overestimated the breakthrough somewhat.
http://www.cardiff.ac.uk/jomec/jomecjournal/3-june2013/Kitzinger_Samuel_coma.pdf

Perhaps one of the doctors who cropped up last week to get some publicity can help her family to get her more scans if they feel that's what they need to trust the diagnosis.

If the facilities available for the testing at CHO are good enough for the Chief of Neurology at Stanford, they are good enough for me.

He also did multiple functional tests and her body failed all of them.

ALL OF THEM.

She is failing the physiologic testing as the diabetes insipidus is showing us. Nothing reported in his exam even suggests she could be in a locked-in syndrome. She has brain and brainstem death, most likely due to infarction from the sudden drop in blood pressure due to the bleeding. The end.

 

[SilkySifaka]

It is a very valuable tool for sure although according to this article the popular press may have overestimated the breakthrough somewhat.
http://www.cardiff.ac.uk/jomec/jomecjournal/3-june2013/Kitzinger_Samuel_coma.pdf

Perhaps one of the doctors who cropped up last week to get some publicity can help her family to get her more scans if they feel that's what they need to trust the diagnosis.

I know its a faint hope but mom seems to believe she can respond, and it seems they haven't done the one test that directly tests that in a way that mom can see her baby isn't answering her questions. She could be there to ask her directly. However if they don't have an fmri scan on board, it probably means the hospital doesn't have one which would mean transfer to another hospital for the test and include a breathing tube etc.

 

[Donjeta]

Jahi's death has no effect on the rights of the still living family to get treatment in various facilities.

 

[SilkySifaka]

How can arrange any help with another institution? She is brain dead and legally dead. Insurance won't pay for her care. What institution is going to take in a legally dead patient?

I was hoping for help for the mom. She is the patient now

 

[MEN3C]

True but the fmri shows them actually being able to answer questions directed to them and no one knows they are locked in until the fmri is doen which few hospitals have. Thats why people have been considered vegetative for decades. Imagine if they had the fmri when Terri's case was being considered. For all we know she was alive and conscious when discussion of removing life support was done. It is only the last couple of years the technology is there to weed out the locked in's.

I think mom might be more able to accept it if she sees her daughter can't answer questions or respond to the fmri.

Obviously I am only going by the court documents and media reports, but there doesn't seem to be any clinical indication for an fMRI.

Locked in syndrome is a known syndrome with signs. You can diagnose it without a fMRI. It's a pontine syndrome (e.g brainstem) which usually spares the function of the higher brain. Meaning, the EEG would, in most cases, be near normal instead of isoelectric as in her case. There are also many other differences.

If you want to read up on the differences between coma, vegetative states, locked in syndrome and brain death, here is a great summary (the whole thing is good but page 3 has a table with what you'd expect to find in different tests): http://www.coma.ulg.ac.be/papers/vs/Coma_Yearbook2001.pdf

 

[SilkySifaka]

Jahi's death has no effect on the rights of the still living family to get treatment in various facilities.

It doesn't have an effect on the right but mentally ill people which i believe mom is with her denial and grief, situationally at least, should have care offered in any way possible to get them to accept it. They aren't going to arrange it themselves. imo

 

[popsicle]

I know its a faint hope but mom seems to believe she can respond, and it seems they haven't done the one test that directly tests that in a way that mom can see her baby isn't answering her questions. She could be there to ask her directly. However if they don't have an fmri scan on board, it probably means the hospital doesn't have one which would mean transfer to another hospital for the test and include a breathing tube etc.

She thinks she can respond, believes she will recover, believes she isn't suffering and that the vent tube isn't hurting her. Jahi isn't getting anything for pain btw. Mon also believed getting another opinion thru the court would give her the answer she wants. Until Jahi's heart stops, she will not accept/believe. imo

 

[Elley Mae]

Jahi’s mother, Nailah Winkfield, agreed to be responsible for whatever happens to the teen when she is moved, including the possibility of cardiac arrest.

http://www.cbsnews.com/news/jahi-mcmaths-family-hospital-reach-agreement-to-move-teens-body/

Schiavo, who was in a persistent vegetative state after brain damage due to a heart attack, died in 2005 after being at the center of a long legal battle. Her husband finally won permission to remove her feeding tube over her parents' objections.

 

[SilkySifaka]

Obviously I am only going by the court documents and media reports, but there doesn't seem to be any clinical indication for an fMRI.

Locked in syndrome is a known syndrome with signs. You can diagnose it without a fMRI. It's a pontine syndrome (e.g brainstem) which usually spares the function of the higher brain. Meaning, the EEG would be near normal (her EEG was isoelectric). There are also many other differences.

If you want to read up on the differences between coma, vegetative states, locked in syndrome and brain death, here is a great summary (the whole thing is good but page 3 has a table with what you'd expect to find in different tests): http://www.coma.ulg.ac.be/papers/vs/Coma_Yearbook2001.pdf

but in all the studies and eeg's etc of vegetative patients they never discovered the locked ins they have with the fmri. It has found dozens of people being treated as pvs's are actually alive, awake, conscious and able to talk to the doctors. This is what I hope mom would realize with that test, that Jahi can't talk to her and isn't talking to her when she thinks she is. At a specific time and place with direct questions where as all the evidence shows that it can prove someone conscious when considered a PVS at least which mom seems to believe

 

[jjenny]

Jahi’s mother, Nailah Winkfield, agreed to be responsible for whatever happens to the teen when she is moved, including the possibility of cardiac arrest.

http://www.cbsnews.com/news/jahi-mcmaths-family-hospital-reach-agreement-to-move-teens-body/

Schiavo, who was in a persistent vegetative state after brain damage due to a heart attack, died in 2005 after being at the center of a long legal battle. Her husband finally won permission to remove her feeding tube over her parents' objections.

And Schiavo had the opposite of a lock in syndrome. Schiavo's brain stem was functioning. She could breathe on her own with no problems. But her higher brain was not functioning. But Schiavo was never considered dead before feeding tube was removed.

 

[popsicle]

It doesn't have an effect on the right but mentally ill people which i believe mom is with her denial and grief, situationally at least, should have care offered in any way possible to get them to accept it. They aren't going to arrange it themselves. imo

Which is exactly why Mom should not be Jahi's GAL. imo

 

[Donjeta]

If the facilities available for the testing at CHO are good enough for the Chief of Neurology at Stanford, they are good enough for me.

He also did multiple functional tests and her body failed all of them.

ALL OF THEM.

She is failing the physiologic testing as the diabetes insipidus is showing us. Nothing reported in his exam even suggests she could be in a locked-in syndrome. She has brain and brainstem death, most likely due to infarction from the sudden drop in blood pressure due to the bleeding. The end.

I don't really believe that it's about the facilities or the quality of the tests for the family. Finding flaws in the tests has never been their main argument, they're not saying that Jahi wasn't tested well enough, test better and then we might believe you. Rather they're saying (IMO) that it doesn't matter about the testing, they've chosen to believe that she can recover and their only medical witness to that effect didn't do any testing at all, he just asserted.

If one of the miracle cure guys could provide a test that can convince the family and bring them some peace it would be a way justify their free publicity run in the wake of a deceased child's tragedy but I have a hard time believing some of them would do anything for free.

 

[Donjeta]

but in all the studies and eeg's etc of vegetative patients they never discovered the locked ins they have with the fmri. It has found dozens of people being treated as pvs's are actually alive, awake, conscious and able to talk to the doctors. This is what I hope mom would realize with that test, that Jahi can't talk to her and isn't talking to her when she thinks she is. At a specific time and place with direct questions where as all the evidence shows that it can prove someone conscious when considered a PVS at least which mom seems to believe

People in persistent vegetative state are always considered alive.

I see your point about seeing a blank brain scan when mom thinks Jahi's responding to her voice etc. or purposefully moving.

But it seems extremely unlikely at this point that anyone would offer to do this for someone with a death certificate.