Re: Contemplations on Brain-Death

September 21, 2002

Ed you make many valuable points. I WAS one of those unfortunate ones who

doctors told " Your son is brain dead. There is really no chance for

survival. " I was approached 1 day after his accident to " Consider donation of

his organs. " Now Nate and I had had the conversation in years past before his

injury about what he wanted after his death. He had a desire to donate his

body to science so others could get use out of a body he no longer could. If

it could somehow help others through use or research he wanted it. Luckily it

was Nate's biological father who refused to remove Nate from life support.

(Just a respirator.)

His father is a TBI survivor himself, and had been in a coma, and came out of

it, is walking, talking, pretty high functioning compared to his son.

When I inquired about organ donation, and what could actually be donated, I

was told the only thing that could be harvested from Nate was his corneas and

skin, as he had been on a ventilator, and that made him ineligible to donate

organs like heart, kidneys, liver...

The doctors were so quick to tell me Nate was brain dead, yet they did in NO

WAY present evidence to me that he was in fact brain dead. No EEG's, no

scans, no tests (Of which I think there are 10 or 12 that have to be

performed to declare someone brain dead.) They just expected me to accept

their word because they were doctors.

I am a well informed, educated individual, who likes to know what one is

getting into as much as possible, and try to make informed decisions.

There ARE, unfortunately MANY parents out there and loved ones who are

unsuspecting of doctors, and place all their faith in them as if they were

Gods, and don't question, or second guess, they don't research, or

investigate. It is those siblings, children, parents or loved ones of those

unsuspecting or uninformed people who are the unfortunate ones who end up

never getting that second chance. All because some doctor deemed them " Brain

dead " without following guidelines or exhausting all means for determination

that they are NOT brain dead. The ones who are never given a second chance

are not offered an opportunity for survival because, how can one know there

are certain criteria if they are never told about it in the first place, and

this is tragically so often the case. Case in point... HBOT. Nate had

compartment syndrome (One of the conditions approved by insurance for HBOT,)

another was intracranial abscess (Another approved condition for HBOT.) I was

NEVER told or offered the option for HBOT for either of these conditions with

Nate. Instead I was told surgery was the ONLY option. I knew about HBOT a few

weeks after his accident, as I had come across it on the Internet at the

Hospital's OWN medical library computers. I presented it as something I

wanted to try with Nate to try to help his brain injury. The head neurologist

assigned to my son emphatically said " NO - DENIED, " then followed it with,

" That is experimental anyway. " I further inquired about giving him a SPECT

scan. Again I was told " Denied. " I asked if they even had the ability to do

SPECT scanning? I was told " Yes, but it is only used in experiments. " I

begged, " Then experiment on Nate. " " NO " was my final reply.

So if people are never TOLD there is certain tests to determine brain death,

they cannot ask for them or the results of them before ending someone's life.

Tammy & Nate

September 21, 2002

To All,

I read this and it forces me to reflect, and speak out (with some meandering).

RE: Brain Death Article: " Dr. Gruen explained that there is a lot

of pressure on physicians to declare a patient brain dead when donor organs

are in such short supply. "

I had no idea that some physicians were investigating the patients state so

superficially.

I think everyone is well aware of my issues with children and brain

injuries, removing them from life support and declaring them brain dead. I

am also aware that many others on this list share my intense feelings on

this issue.

While I do not know the precise influences, or words used in the

Weiss case, but, that was one of the influences noted.... that the father

should " remove him from the respirator and donate his organs. "

These are tremendous challenges for us parents of brain injured children

and this act leaves permanent and vicious scars on us, regardless of the

decision we make (whether keeping them on life support to " suffer " , or

" give-up " on them and remove them from life support.

For 's case, I read her EEG's and they were virtually flat and her

CAT scans demonstrated physical damage to half her brain. She obviously had

attained an injury that had ended any possibility of life....... or did it?

The Mercy San Hospital (where she was in the NICU) has a hyperbaric

chamber, and the one thing that I regret, is not knowing about HBOT, and

putting her into the chamber instead of simply ending her life.

The fact that miraculously survived doesn't change the issue.

Some children will die from their injuries and their conditions. That is a

painful part of life. But, to have a parent remove the child without

knowing whether they are truly dead, and without trying a final valid

medical treatment, is too much to ask, or push on parents.

This simply makes parents guilty of infanticide which has to be one of the

most reprehensible acts that any person can be guilty of. Any system, or

government that requires this must be changed, regardless of the cost.

And, while the government may debate the issues of " anecdotal " evidence, it

doesn't alter that fact that for almost every other condition, or illness,

health care providers are held to the standard to due all that is required

to save a life, regardless of cost, and regardless how long the person will

live, or the quality of life thereafter.

It is only our kids that we must kill without using valid medical

technologies.

This issue should not be lost on any naysayer, regardless of the reason

they oppose HBOT for brain injuries, particularly in the uniquely

recoverable infant's brain. And, this issue should not be lost on

naysayers who refuse to speak in public debates on the HBOT for neurology

because they do not have " adequate expertise " as a number of naysayers have

espoused for the upcoming International Congress on Hyperbaric Medicine.

If their expertise is so insignificant, then they should stop opposing us

and leave the scientific debate for the " experts " who hold themselves up to

be accounted for. To do otherwise is to participate in the infanticide of

our kids!

(If you doubt this, remember, if you kill someone while doing something

stupid, you are still held for manslaughter). And, remember, the Nazi's

didn't break a single law, or regulation in implementing their

crimes. But, they were still held accountable after the lost the war.

Today, even the corporations who willfully, or otherwise participated with

them are being held accountable.

Everyday that passes that child with a brain injury is legally denied valid

and cost saving medical care is a crime. The current research available is

substantial and the clinical outcomes is undeniable. The fiasco at the

AACPDM simply demonstrated the willful ignorance that is preventing our

kids from being treated. For any other condition, or illness, this level

of willful ignorance would be viewed as willful negligence (and easily won

in court).

This year HBOT has made some great and significant strides in demonstrating

its scientific basis, as well as the truth of clinical applications and

results. And, everyone here, and many others have contributed a great deal

to this. I am thankful for everyone's efforts to help our kids, and to

move medicine and public health policy forward so that parents are not

unnecessarily placed in these situations. And, that even our kids can get

the medical care that is guaranteed by Medicaid as well as our health

contracts - regardless is someone doesn't " like " HBOT.

We will have another big year coming up and a lot more battles. We must

keep our spirits up and our focus strong to help our kids, as well as the

parents who this suddenly falls upon. We will change the world, even if

only a little bit at a time.

Best Wishes To All!

Ed Nemeth

At 10:50 PM 9/19/2002 -0400, you wrote:

>

> Documentation of Brain-Death Testing Often Incomplete

>

> By Alison McCook

>

> NEW YORK (Reuters Health) Sept 09 - Criteria for assessing brain death

> are not applied consistently, at least judging by the documentation of

> the clinical tests used in such cases, US researchers report.

>

> This is a critically important issue, study author Dr. J. Gruen,

> from the University of Southern

>

>California in Los Angeles, told Reuters Health. When standard criteria are

>not followed, the " great fear " is that a patient may be declared brain

>dead when he or she may not be, he said.

>

> Specific guidelines for establishing complete loss of brain function

> have been established for decades,

>

>Dr. Gruen noted. These include a battery of tests that target different

>parts of the brain, and no single test is adequate in determining brain

>death, he cautioned.

>

> However, not all physicians agree on how many criteria are required

> when diagnosing brain death, Dr.

>

>Gruen said. In addition, physicians often disagree on how to proceed if a

>patient meets all but one or two of the criteria.

>

> To determine what methods different physicians use to establish brain

> death, Dr. Gruen and his

>

>colleagues reviewed 121 notes about brain death in the records of 58

>patients evaluated during 1 year at a major medical center. The findings

>are published in the September issue of Neurosurgery.

>

> The investigators found that physicians were most likely to perform

> simple tests when diagnosing brain death, such as pupillary responses and

> gag reflexes. However, they note, only 66% of patients' motor reactions

> were tested, and their corneal reflexes only 57% of the time.

>

> The researchers found that some patients were declared brain dead when

> it appeared that their

>

>physicians had not performed all the tests needed to examine the entire

>brain. " I was unpleasantly

>

>surprised to find that a significant number of people were declared brain

>dead when there were parts of

>

>the brain that were not evaluated, " Dr. Gruen noted.

>

> Dr. Gruen explained that there is a lot of pressure on physicians to

> declare a patient brain dead when donor organs are in such short supply.

> " The concern is that a corner is going to be cut on the donor side of this. "

>

> In their paper, the investigators suggest that " hospitals may need to

> increase quality assurance activities with respect to declarations of

> brain death. " They also recommend physician education to " improve

> awareness of uniform brain death declaration guidelines. "

>

> Neurosurgery 2002;51:731-736.

>

September 21, 2002

Here are some primary classics to determine if someone is " Brain dead " .

{Unfortunately some have pulled " the plug " too soon}.

1. patient must be unresponsive to sensory input including pain and

speech.

2. Brainstem reflexes must be absent, including " Doll's eye " reflex.

3. Pupillary reflexes are absent and eye movement does not occur after

placing cold water in the ear.

4. There are no respirations.

5. The cause of coma is known and irreversible.

6. There is evidence of drug intoxication, hypothermia {body temperature

is below 90 degrees F.}, shock, or neuromuscular blockade {anesthetic}.

7. All of the above must be present for 6 hours and the EEG is flat.

8. All of the above must be present for 12 hours and there is no EEG

available.

9. All of the above must be present for 24 hours for an injury where the

brain is denied oxygen without an EEG.

This is another reason why Hyperbaric Neuroxygenative Medicine must be

made known to ALL doctors, patients and their families.

If medical doctors gave hyperbaric treatment starting from conditions

such as fetal distress syndrome, provided delivery in a specially

equipped multiplace chamber and continued into the NICU and through life

whenever needed, how many lives could be benefited? How much brain

injury could be reversed? Instead of hearing " brain dead " we would hear

the greatest words - Another brain awakening!

Uneducated and unethical medical practice is continued throughout the

world - I believe it is the doctors that need a bit more oxygen

themselves.

It is also interesting to note that the hospital wants you to DONATE a

persons organs when THEY decide your loved one is " brain dead " , but THEY

charge a king's ransom for someone else to RECEIVE those organs. {What

a deal!}

Would it be any worse of a crime against society for a medical doctor

that knows how important Hyperbaric Treatments are to a child in saving

their life, but yet prevents access to Hyperbaric treatment because of

money or politics - who stoops so low as to make a choice to put a

childs life in danger because they choose money and politics over the

life of a child. This is very unethical .. .. " First do no harm " .

~

Lane , PhD

408.364.0471

, CA

Please consider the gift of your signature and review our

petition:

THE AWAKENING PETITION is at:

http://www.petitiononline.com/angel777/petition.html

September 21, 2002

<PRE>Although I am an MD, I must admit that my experiences behind my ordeal with

have made me more than a little cynical about my chosen profession

and th politics involved. I have seen the Hippocratic Oath violated on more

than one occasion. All of that being said however, please remember, there

are bad people and good people in every profession

September 21, 2002

Oops! I clicked before I finished.

......I was saying, there are bad people and good people in every profession,

but most are stuck somewhere in the middle out of fear, ignorance, laziness

or their own acceptance of mediocracy.

September 21, 2002

oops again...

Many are just plain worn out by all of the red tape and political road

barriers to try to do anything out of the ordinary. then if they are tied up

in a major institution...they are just that.... tied, bound by the

regulations of the institution, which seldom makes room for anything novel

and overly contemporary. If you have a doctor that is walking down this

hyperbaric road with you in more than the most cursory way, assume that they

are taking on some high cost and taking some risk, including increased

malpractice insurance and a shockingly higher rate of getting sued

successfully if an " alternative therapy " doesn't work for somebody-even

though we all know that not everything works for everybody. Doctors on this

listserv should be applauded in their efforts to be on the cutting edge,

because they are paying a high price to do so...even if it is just being

shunned to the outerbanks of the profession for being a little " eccentric "

and we see on this listserve what a bashing the DO's take for practicing

outside of the realms of the " traditional " MD. So, don't beat up the

doctors...gently educate them often and let them know they have support if

they choose to walk on the fringes of medicine as we understand it today!

.....and remember that we are all mostly afraid of what we don't

understand.......

Dr. Cheryl Bruce, MD

The Center

For Exceptional Children and Families, Inc.

" Where growth begins! "

P.O. Box 732

Belmont, CA 94002-0732

http://www.gregorycenter.org

cheryl@...

1-650-591-1181

September 21, 2002

<PRE>Altruism.....rare even in the medical profession....reportedly it is

counterproductive to the concept of " Survival of the fittest. " Dr. ,

you are to be commended for your committment to the cause, especially since

you yourself have " typical " children. If we can all keep the torch burning,

we can start a major conflagration and soon we'll be the dinosaurs that

remember the days when HBOT, patterning and the likes were the exception

rather than the rule. Education is the key!

September 21, 2002

Thank you . I will go check it out. (Nate's injury happened 5/10/97)

Tammy & Nate

September 23, 2002

>Ed you make many valuable points. I WAS one of those unfortunate ones who

>doctors told " Your son is brain dead. There is really no chance for

>survival. " I was approached 1 day after his accident to " Consider donation of

>his organs. " Now Nate and I had had the conversation in years past before his

>injury about what he wanted after his death. He had a desire to donate his

>body to science so others could get use out of a body he no longer could. If

>it could somehow help others through use or research he wanted it. Luckily it

>was Nate's biological father who refused to remove Nate from life support.

>(Just a respirator.)

>

>His father is a TBI survivor himself, and had been in a coma, and came out of

>it, is walking, talking, pretty high functioning compared to his son.

>

>When I inquired about organ donation, and what could actually be donated, I

>was told the only thing that could be harvested from Nate was his corneas and

>skin, as he had been on a ventilator, and that made him ineligible to donate

>organs like heart, kidneys, liver...

>

>The doctors were so quick to tell me Nate was brain dead, yet they did in NO

>WAY present evidence to me that he was in fact brain dead. No EEG's, no

>scans, no tests (Of which I think there are 10 or 12 that have to be

>performed to declare someone brain dead.) They just expected me to accept

>their word because they were doctors.

>

>I am a well informed, educated individual, who likes to know what one is

>getting into as much as possible, and try to make informed decisions.

>

>There ARE, unfortunately MANY parents out there and loved ones who are

>unsuspecting of doctors, and place all their faith in them as if they were

>Gods, and don't question, or second guess, they don't research, or

>investigate. It is those siblings, children, parents or loved ones of those

>unsuspecting or uninformed people who are the unfortunate ones who end up

>never getting that second chance. All because some doctor deemed them " Brain

>dead " without following guidelines or exhausting all means for determination

>that they are NOT brain dead. The ones who are never given a second chance

>are not offered an opportunity for survival because, how can one know there

>are certain criteria if they are never told about it in the first place, and

>this is tragically so often the case. Case in point... HBOT. Nate had

>compartment syndrome (One of the conditions approved by insurance for HBOT,)

>another was intracranial abscess (Another approved condition for HBOT.) I was

>NEVER told or offered the option for HBOT for either of these conditions with

>Nate. Instead I was told surgery was the ONLY option. I knew about HBOT a few

>weeks after his accident, as I had come across it on the Internet at the

>Hospital's OWN medical library computers. I presented it as something I

>wanted to try with Nate to try to help his brain injury. The head neurologist

>assigned to my son emphatically said " NO - DENIED, " then followed it with,

> " That is experimental anyway. " I further inquired about giving him a SPECT

>scan. Again I was told " Denied. " I asked if they even had the ability to do

>SPECT scanning? I was told " Yes, but it is only used in experiments. " I

>begged, " Then experiment on Nate. " " NO " was my final reply.

>

>So if people are never TOLD there is certain tests to determine brain death,

>they cannot ask for them or the results of them before ending someone's life.

>

>Tammy & Nate

Tammy,

I don't know when Nate's injury occurred, but in the literature is an

article on the use of SPECT-scan imaging to determine brain death. You can

download it from

medicaid/files/SPECT_brain_death.PDF .

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

" Trust in the LORD with all your heart and lean not on your own

understanding; in all your ways acknowledge him, and he will make your

paths straight. Do not be wise in your own eyes; fear the LORD and shun

evil. " [Prov. 3:5-7]

Freels

2948 Windfield Circle

Tucker, GA 30084-6714

770/491-6776 (phone and fax)

509/275-1618 (efax, sends fax as email attachment)

mailto:dfreels@...

http://www.freelanceforum.org/davidfreels

September 23, 2002

Tammy,

Your story is why we fight against apathy and status quo.

(Having two conditions specifically covered by insurance be " denied " ....

that is one of the situations that will have to be accounted for in the

future.)

Bless you and Nate!

Ed

At 11:31 PM 9/20/2002 -0400, you wrote: