Family wants to keep life support for girl brain dead after tonsil surgery #1

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Winkfield told CNN Monday that she's seen recent improvements in her daughter's condition. A hospital monitor suggests her daughter is trying to breathe on her own, she said.
"They told me without your brain, you can't take your own breath," Winkfield said. "Well, she's trying, so that means something's working."

http://edition.cnn.com/2013/12/23/health/jahi-mcmath-girl-brain-dead/

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Hi Donjeta! havent seen you in a while. We lost a 3 yr. old nephew after a plain tonsillectomy. This was years back. It is soooo dificult to see your child on a ventilator. The longer on a ventilator the more dependent one is. They do C-scans and EEG to find brain death. The brain uses two separate sections for breathing, one in and one out. My son was on one for a while but started breathing on his own when weaned off ventilator.
My husband was on one also after a brain aneuysm. I could tell also by his eyes he had passed. Took about 2 minutes after removal for him to stop breathing. We had settled this issue for both after Joey passed. It's not easy. My heart goes out to the family.:please:
 
Well I don't know if I would say that taking a person off life support after 15 years is "premature." But Terri Schiavo wasn't brain dead, like this little girl. Brain damage and brain stem death are two different things. Do you believe a person can recover when their brain has totally flat lined and there is no function in the actual brain stem itself?

I think Terri's case is different (and her husband should have let her parents care for her). However, I think the hospital may have messed up here and why can't the family be allowed to take her home on life support? Or put her in a hospice? It's always about cost but it's unlikely this little girl will last too long. I get why the family feel the way they do. She is warm and her heart does beat so to them, she is alive. Frankly, I have a hard time with the concept that she's not, myself.

I am pretty sure life support equipment is very expensive.
As for being alive, if she is brain dead, then it's the body that appears alive. The person is gone. I am not sure what is the point of keeping the body alive if there is no chance of recovery.
 
I admit i do have an issue with the family being the only one who can release info to the press. The hospital and doctors are bound by HIPPA and the family refuses to let them discuss the case. So what we hear is one sided and very conflicting.

For instance, her mother said that Jahi "had no health problems", yet we know that her operation was no simple tonsillectomy and was preplanned to have her recover in the ICU. Sorry but obesity and scheduling ICU care as part of a surgical plan for a tonsillectomy tell me that this was not a girl with "no health problems". No health problems would mean that Jahi did not need this surgery.

I understand that the family presents this in an emotional manner and that captures people. But when it comes to medical issues and legal issues, we need to deal in facts. With each addition expert who asses Jahi (today was the 6th expert assessment), I doubt there is any chance for hope.

Other cases presented here of "brain dead" people who recovered had other complications (catastrophic accident and trauma) and anecdotal summaries of the cases. Not the absolute facts and medical info to show what tests were done and what the results were. We haven't seen a comprehensive examination of the facts (which i would be very interested in hearing about).

Brain death is declared using the guidelines in the UNIFORM DETERMINATION OF DEATH ACT from the 1980's. I believe all states use it although I think that each state and/or hospital uses slightly different variations of what they do to determine brain death.

So I can see that perhaps this issue needs to be revisited and revised since it was first enacted. There have been many technological advances since then, along with some cases that are proclaiming that brain death can be recovered from.

I would be fine with there being more stringent protocal and that the best and up to date technology, tests and such be used to conclusively diagnose brain death. That way no one who allowed their loved one to be removed from life wupport would ever wonder if their loved one would have recovered as did the ones in the alleged brain death cases above.

Perhaps that will be Jahi's legacy. Her case may bring about the awareness that this uniform act needs to be updated to be in accordance with advances in technology, medicine, laws, ethics, etc.
 
I am an ICU nurse, and have worked extensively with patients who have suffered brain death. I feel terrible for the family, however this nonsense with the press and legal system will not bring her daughter back. It will only serve to prolong their pain and increase the stress of the staff who are trying to serve their daughter.

Brain dead is dead. Period. There is no return from brain death.

Once the court appointed neurologist confirms the original brain death diagnosis or a cerebral perfusion scan is done hopefully the family will be able to let their daughter go in peace.

Beyond that I am bowing out if this discussion because it just angers me.

Sent from my SGH-I337M using Tapatalk
 
Very well said, Swamp Mama. Thank you!

And in addition to the standard brain death protocol, this article also discusses that there will be a brain nucleotide PET scan performed (not sure if one has been done already by the previous exams, but I wouldn't be surprised if it has been done once, since she has had about 5 exams already).

http://www.mercurynews.com/breaking...land-court-appoint-independent-expert-examine

He said an EEG will be performed by Fisher, as will a brain nucleotide scan, in which dye will be inserted into the blood stream to see if blood is reaching the brain.

Here is some discussion of what that process is:

http://www.nucmedresource.com/brain-death-scan.html

http://interactive.snm.org/docs/pg_ch20_0403.pdf

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC28989/

Until January 1996, brain death was typically determined using one of the first two methods described above. The third option was reserved for patients with equivocal examinations due to confounding factors (pentobarbital, etc). In order to speed the determination of brain death and potentially reduce costly ICU stays, beginning in January 1996 the brain flow scan became the primary method of confirming brain death in our trauma patient population.

And THIS article discusses the danger of only relying on the PET scan in young trauma patients in the first hours. Jahi's case is not at all like Zach Dunlap's. who had severe head trauma. It has been nearly 2 weeks since the first finding of brain death, and the PET scan will likely confirm this.

http://theness.com/neurologicablog/index.php/brain-dead/
 
I was thinking the same thing. I would imagine she is on cardiac drips, dopamine to stimulate the kidneys, and drugs to reduce brain swelling, EEG monitoring, along with ventilating her. What a nightmare for this family. It is hard enough to know your daughter has been declared brain dead and on the other hand accept it. I really hope the admins are not as harsh as they seem. You know the hospital attorney is in those meetings. The family wants their daughter for Christmas. I really hope they can have their wish. Sometimes reality sucks. JMO

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I read the Uncle said she is still alive because her heart is beating. Did the Doctors explain her heart beats because the ventilator breathes for her? Her heart more than likely is not beating on its own.I sat on the bed and put my head lightly on my husbands chest. I heard his heart give it's final beat. It beat about 2 minutes at most. I felt his "last breath".
 
Judge tells Calif. hospital to keep treating teen

updated 1 hour 10 minutes ago

OAKLAND, Calif. — With a family fighting a hospital to keep their daughter who has been declared brain dead on life support, a California judge on Monday ordered the hospital to keep treating 13-year-old Jahi McMath for another week as a second medical evaluation is conducted.

Jahi experienced complications following a tonsillectomy at Children's Hospital in Oakland.

As her family sat stone-faced in the front row of the courtroom, an Alameda County judge called for Jahi to be independently examined by Paul Graham Fisher, the chief of child neurology at Stanford University School of Medicine.

The judge also ordered the hospital to keep Jahi on a ventilator until Dec. 30, or until further order from the court.

The examination was expected to occur later on Monday, and early Tuesday...

http://www.nbcnews.com/id/53905931#.UrjqOZWA3X5
 
CNN report from last week
http://www.wptv.com/dpp/news/nation...ry--family-says-it-wants-to-keep-life-support

"After the surgery, she (Jahi) was fine. She went into the recovery room. She was alert and talking, and she was asking for a Popsicle because she said her throat hurt. As part of the procedure, she was meant to spend the night in ICU," Sealey said. "When she got moved to ICU, there was a 30-minute wait until any family member could go see her. Upon entry, they saw that there was way too much blood."

"She lost four pints of blood. She had to have four blood transfusions. She had two liters of blood pumped out of her lungs, not including what was in her stomach," Sealey said. "There was an enormous amount of blood, and we kept asking, 'Is this normal?' Some nurses said I don't know and some said yes. There was a lot of uncertainty and a lack of urgency."

snip

Back in the intensive care unit, Jahi quickly took a turn for the worse.

Sealey said that when Chatman noticed that her granddaughter's oxygen levels were dangerously low, she called for help.

Jahi went into cardiac arrest. The medical staff did chest compressions in an attempt to revive her and tried different medicines to clot her blood, but nothing seemed to work.

On Tuesday, a CT scan revealed that two-thirds of Jahi's brain was swollen.

"During the resuscitation, she lost a lot of oxygen to the brain, and now she was brain damaged. They (doctors) feared that it could progress and get worse, and it did. Now she is 100% brain damaged. Medically dead," Sealey said.
 
But you just have to "let" them go....It's not about us, it is about them! JMO...

How is it about them? If they are dead and their body is just a shell, then they're gone and all it's about us, the ones grieving and left behind.

I see so many posts with "I feel sorry for them, but..." and then talking about cost or how they have to accept facts, or are being selfish, or even cruel (to a body that lacks brain stem activity) etc. Until we walk a mile, however, in their shoes, I don;t know how fair it is to criticize.

If there wasn't a question of limited resources then I would agree with you. But the reality is that there are only so many ICU beds, ventilators, nursing staff, etc. Additionally, all these things cost money. Who is to pay if in every case of brain death the hospital is required to keep the body hooked up to machines until multiple organ failure occurs? The family? The hospital? The taxpayers? Should these extensive measures be taken for every patient, or only for the ones whose family goes to the media or gets a lawyer? What if the bed, the ventilator, the nurses are needed to care for someone who has a chance to live? Does that person lose his or her chance to receive life-saving care because brain-dead bodies are being kept alive until the last organ system breaks down?

I feel horrible for Jahi's family, but their daughter is never going to 'spark awake' or come back to them. At a certain point, it is selfish to use limited medical resources in a hopeless cause (IMO, of course.)

I just hope brain-dead bodies don't feel any pain. :(

If a brain dead body felt pain then clearly, the person would not be dead. Pain = existence. I think it is horrible that in the U.S., we are still making medical decisions based on cost.

I think extensive measures would not be taken for every patient and should not be taken. Most people are able to accept after a while and with evidence. I hear an "entitlement" vibe going on. I don;t like that. These are people facing the sudden death of their little girl. If I felt someone was trying to take my baby, I'd go to the news, get a lawyer, whatever to fight for my child.


Wow, the different tests they do, that's an education. I hope they did all of it in this case and made sure there was no blood flow. Also, from the article:
Barrios said it's not unusual for family members to resist a diagnosis of brain death.
While the hospital is not obligated to keep life support going after that diagnosis, Barrios has left brain dead patients hooked up for up to five days while family members move toward acceptance, he said.
"I understand why sometimes for families it's devastating and confusing," he said.
I think if the hospital had not moved so quickly and had allowed the family to come to a slow understanding, things may have turned out differently. This was a shock.

My 18-year-old daughter had a tonsillectomy on December 16 and I've been freaking out the whole time. She's on day 8 post op now and is recovering well, but I'll be glad to get past day 10.

I don't blame you! She'll be great, though and we're all thinking of you and your daughter!

I'm curious about the "suctioning" of the blood the family members were doing. Is it possible they thought they were being helpful and started doing this prior to the bleeding event leading to the cardiac arrest? Thus contributing to heavy bleeding?

Very, very, sad event. I believe the mother is just hoping against all hope that this will all go away and that her daughter will wake up smiling. I am quite sure she was informed the bleeding was a possible complication. I was terrified when my son had a tonsillectomy because of this possible complication. (Instead he had a total asthma attack in recovery and then broke out in hives all over his body.)

A young eight year old girl in my son's elementary school did die from this exact complication. She had already been discharged from the hospital. Unfortunately, it does happen.

Isnt the aunt an ER nurse? I doubt they caused this issue. But I had no idea this was a not so rare complication. Scary, ButForFortune.

'Miracle recovery' of teen declared brain dead by four doctors

http://www.telegraph.co.uk/health/h...teen-declared-brain-dead-by-four-doctors.html

This is not even two years old.

jmo

Here is another:

Man makes “miraculous” recovery from brain death after accident

http://www.catholicnewsagency.com/n...ous_recovery_from_brain_death_after_accident/

And there's more. In this article, we learn that "brain death" was a legal definition that was not created until a 1981 presidential panel determined such a state equals death:
Jahi's family and doctors disagree over whether she's dead, but on one topic everyone is united: She is a very special case. Almost all deaths are because of heart and lung failure. Less than 1 percent fall into the category of brain death, a condition officially incorporated into the definition of death by a 1981 presidential panel of doctors, lawyers, researchers, psychologists and ethicists charged with defining death at a time when rapidly advancing technology was blurring the lines between life and nonlife.
Medical, legal guidelines

According to the panel's report, death occurs when "an individual has sustained either (1) irreversible cessation of circulatory and respiratory functions, or (2) irreversible cessation of all functions of the entire brain, including the brain stem."
The report was the basis of the Uniform Determination of Death Act, a draft law later adopted by many states, including California, that provides medical and legal guidelines for determining death in cases when the brain has stopped functioning.
The guidelines were intended to help doctors and families navigate the nuanced and difficult decisions about ventilators, feeding tubes and other life-sustaining measures. But they remain silent on time of death, stating that the actual declaration of death is to be determined on a case-by-case basis. http://www.sfgate.com/health/article/Alive-or-dead-Brain-death-a-complicated-issue-5083320.php

So the law has determined that Jahi's medical state is the same as death.

Then, there's this:
Parts of the brain may still be active after a commonly used brain activity reading goes to a flat line, according to a study on cat brains published Wednesday in the online journal PLOS One.
In all of the cats, a previously undocumented “ripple event” was evident in the hippocampus after EEG read-outs went “flat,” indicating a silenced cortex. The results appeared to replicate what had been seen in the human patient, according to the study.
The findings could revive debate over the criteria for declaring a person “brain dead.” In the U.S., two such flat-line readings 24 hours apart are necessary, along with other tests of brain function.
Researchers said their findings suggest that the brain can survive an extremely deep coma and that inducing such a state could help preserve some brain function that otherwise might cease, causing the brain to atrophy. http://articles.latimes.com/2013/sep/18/science/la-sci-sn-brain-activity-death-20130918

Do I think Jahi is going to recover? No. Do I think her family may be deluded? Yes. But here's the thing: While I don't want my laws governed by others' religious beliefs I also don't want the law to restrict my or others' religious beliefs - or non-beliefs (except in certain, specific circumstances, like Hindu bride burning, Muslim genital mutilation, etc.) and I don't want the government making life or death decisions for me or my family.

The only detriment to keeping Jahi alive is cost. This family believes she may recover. There have been some cases where the doctors were wrong. If it was your kid and your belief, how would you feel?
 
Cost is a consideration for everything, but not here? And what is the point of keeping a body with a dead brain on life support?
Anyhow, she is getting a third opinion that is due tomorrow. If the third specialists agrees that she is brain dead, what is the family going to do next?
 
For those interested, these are a nice overview of the UPPP procedure.

Uvulopalatopharyngoplasty - Wikipedia, the free encyclopedia

http://emedicine.medscape.com/article/1004104-treatment#aw2aab6b6b9

I wanted to address the comments made by the family related to oral suctioning, as a poster upthread asked some questions.

“A 13-year-old should not have to suction herself,” Sealey said. “She had to use a suction machine to suction her own blood. Her mother and stepfather had to suction out her blood at points. None of them work for this hospital.”

http://www.nbcbayarea.com/news/local/Oakland-8th-Grader-Brain-Dead-After-236015681.html

With this combination of procedures (UPPP, T & A, nasal turbinate reduction), a patient will have a REALLY, REALLY sore throat. Swallowing is very difficult and painful, and most patients will want to spit out saliva and secretions, and blood, in the first hours and days. Most patients are provided with a yankauer suction tip to hold and use, which is a rigid suction wand similar to what dentists use. It is hooked up to a collection canister, and the suction is turned on at an appropriate level for periodic oral suctioning. They are instructed to only put the tip to their lips, so as not to disturb the surgical sites. The nurses will tape a wrapper or other container close to the patient, such as on the bed rails to park the suction wand and keep the end clean between uses, so the suction tip is handy for the patient to use.

Yankauer suction tip - Wikipedia, the free encyclopedia

I don't find it at all unusual that she and her parents were handling and helping her with the suction tip at the point where she was alert, and breathing on her own. The bigger issue was the amount and quality of the bleeding, and the awareness of the staff about that, what interventions were going on, etc. We will never see the medical records, so it's hard to tell exactly what was going on, and the timetable. There are lots of contradictions in the various articles on the web.

Understandably, in their grief and anger the family is suspicious and critical of everything involved with the care of Jahi, past and present. It is hard for me to hear these criticisms about the "entire" ICU staff not being attentive enough, because in a major metro pedes ICU the staff is typically top notch. We only have the point of view of the grieving and angry family, and I think it's important to remember that this is a major urban pediatric hospital, staffed with highly competent docs and nurses.
 
Cost is a consideration for everything, but not here? And what is the point of keeping a body with a dead brain on life support?
Anyhow, she is getting a third opinion that is due tomorrow. If the third specialists agrees that she is brain dead, what is the family going to do next?

Cost can be a consideration but should not be the deciding factor. Also, what is the actual cost? Costs are artificially inflated for business purposes. Thats why the same medications are a fraction if the orice in Canada as they are here.

And what's the point of keeping a brain dead body alive? Empathy. Hope. Compassion. Freedom to practice one's faith. Understanding that science is fallible. Not giving a government panel the power to decide what is life. Humanity.
 
Barrios said it's not unusual for family members to resist a diagnosis of brain death.
While the hospital is not obligated to keep life support going after that diagnosis, Barrios has left brain dead patients hooked up for up to five days while family members move toward acceptance, he said.
"I understand why sometimes for families it's devastating and confusing," he said.

I think if the hospital had not moved so quickly and had allowed the family to come to a slow understanding, things may have turned out differently. This was a shock.

She had the operation on Dec 9, brain death tests performed on Dec 11 and Dec 12, declared brain dead on Dec 12. Family told vent would be disconnected on Dec 17, family starts calling for an attorney on Dec 16, go to press on Dec 15. So the family had the five days that the above doctor says he often gives families to come to acceptance.
 
Can any of the WS'ers with medical experience respond to my question about the below quote? I aw this last night in another website and then today it showed in an article about Jahi. (Dr Byrne who is speaking is the one who feels brain death is not death at all and makes a living it seem touting this point of view).

In a phone interview, Byrne said he could not comment in detail because he had not seen any of Jahi's medical records. But the fact that her ventilator is still functioning properly is a sign that she is alive, he said.

"The ventilator won't work on a corpse," he added. "In a corpse, the ventilator pushes the air in, but it won't come out. Just the living person pushes the air out."
( http://www.nbcnews.com/id/53905931#.Urj1188czIW )

As a first responder we have done CPR on a person who is dead and that we know are not going to come back. But to follow protocol and because we have had instances where the loved one was there with us and we know they wanted us to do everything possible, even long after we as experts knew it was futile (not claiming I am the expert, the other guys were).

We put air into the deceased patient (Ambu-bag, hand pumped breaths) and the air was expelled. Their chest rose and then fell (as we stopped pushing in the air) as long as we kept putting the air in.

But it was NOT life any more than me blowing up a balloon and releasing it rather than tying it. It would expel the air and take of across the room. My kids used to love doing it but it is not life, even though the balloon pushes the air out and flies across the room.

If that is Jahi pushing the air out then why isn't she also taking it in? Why is she on a ventilator then, since her lungs are working according to him? Why doesn't he address that ? (and indeed part of the protocol for brain death is taking the patient off the vent to see if they have any efforts to breathe)

So what do you say about his remark that the fact that her body "pushes" the air out?? I don't think it is purposefully "pushed" out. It is simply released much like the inflated but untied balloon. Any thoughts on that statement of his?
 
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I read the Uncle said she is still alive because her heart is beating. Did the Doctors explain her heart beats because the ventilator breathes for her? Her heart more than likely is not beating on its own.I sat on the bed and put my head lightly on my husbands chest. I heard his heart give it's final beat. It beat about 2 minutes at most. I felt his "last breath".

Thank you for sharing your story.

This child has passed. The longer this goes on the more horrible memories are being made of her final days for this family. Jmo

Ciao
 
A brain dead patient does not participate in any part of the breathing process as the breathing center of the brain is dead. This is one of the cardinal signs necessary for the declaration of brain death. Therefore the ventilator is doing all of the work of breathing, essentially serving to keep the remaining organs oxygenated.

Sent from my SGH-I337M using Tapatalk
 
A brain dead patient does not participate in any part of the breathing process as the breathing center of the brain is dead. This is one of the cardinal signs necessary for the declaration of brain death. Therefore the ventilator is doing all of the work of breathing, essentially serving to keep the remaining organs oxygenated.

Sent from my SGH-I337M using Tapatalk

Ok, if that is so (and I do believe you, as you see per my post above), then WHY is Dr Byrne stating that the air from her lungs being released is proof of Jahi "living"? As a medical professional, shouldn't he have the education to know that is a lie and he is promoting a false hope? Isn't it unethical to promote his cause of his disbelief in brain death based upon a fallacy, and using vulnerable and grieving people to make a name for himself?

I'm sorry but that statement of his (if it is as untrue as I feel it is, based upon what I know) paints Dr Byrne as a sham, a seller of snake oil, a man who says what some people desperately wants to hear, promotes his own agenda or is a "paid expert" who shows up on sites as an expert on opposition to "brain death.

His numerous articles and guest appearances as an expert on this supposed fallacy of brain death is simply because few other doctors would publicly proclaim brain death is recoverable. Where are OTHER doctors and experts who back him up?

I don't want to think he is an shady guy and I hope it isn't, BUT since he is such an expert on brains death and is against is, then where are his patients?

Does he work with them? Does he do research and have published studies that are reviewed by his peers? Doe he have patients who are brain dead but recovering and healing? Is there an actual case where he has intervened and made some sort of difference? Has he even had ONE case where a person who was declared brain dead (backed up with facts/documentation, not anecdotes) that recovered? Is he even practicing or affiliated with a hospital? Or is he just all talk, basically being paid to say what some people want to hear?
 
Can any of the WS'ers with medical experience respond to my question about the below quote? I aw this last night in another website and then today it showed in an article about Jahi. (Dr Byrne who is speaking is the one who feels brain death is not death at all and makes a living it seem touting this point of view).

In a phone interview, Byrne said he could not comment in detail because he had not seen any of Jahi's medical records. But the fact that her ventilator is still functioning properly is a sign that she is alive, he said.

"The ventilator won't work on a corpse," he added. "In a corpse, the ventilator pushes the air in, but it won't come out. Just the living person pushes the air out."
( http://www.nbcnews.com/id/53905931#.Urj1188czIW )

As a first responder we have done CPR on a person who is dead and that we know are not going to come back. But to follow protocol and because we have had instances where the loved one was there with us and we know they wanted us to do everything possible, even long after we as experts knew it was futile (not claiming I am the expert, the other guys were).

We put air into the deceased patient (Ambu-bag, hand pumped breaths) and the air was expelled. Their chest rose and then fell (as we stopped pushing in the air) as long as we kept putting the air in.

But it was NOT life any more than me blowing up a balloon and releasing it rather than tying it. It would expel the air and take of across the room. My kids used to love doing it but it is not life, even though the balloon pushes the air out and flies across the room.

If that is Jahi pushing the air out then why isn't she also taking it in? Why is she on a ventilator then, since her lungs are working according to him? Why doesn't he address that ? (and indeed part of the protocol for brain death is taking the patient off the vent to see if they have any efforts to breathe)

So what do you say about his remark that the fact that her body "pushes" the air out?? I don't think it is purposefully "pushed" out. It is simply released much like the inflated but untied balloon. Any thoughts on that statement of his?

What you're describing is passive elastic recoil.

Elastic recoil - Wikipedia, the free encyclopedia

I think that Byrne guy is kind of a quack. JMO. His ideas are definitely not mainstream. Peddling snake oil to the vulnerable. JMO.
 
I don't know exactly what a "veteran nurse" means, but if the grandmother has any medical knowledge then perhaps she could weigh in with the parents?
 
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