CA - Parents Of Toddler Declared Brain-Dead Convinced He’s Still Alive

[jjenny]

And a young child could spend years (decades) on life support. But a brain dead patient is never going to do anything other than lie there. There is no chance of recovery. So a lot of resources would be spend for no apparent reason. And it's not like there are unlimited resources.

 

[sonjay]

And a young child could spend years (decades) on life support. But a brain dead patient is never going to do anything other than lie there. There is no chance of recovery. So a lot of resources would be spend for no apparent reason. And it's not like there are unlimited resources.

Sadly, when the parents "win" in a case like this (think Jahi McMath) — tthey have now put themselves in such a terrible situation. They have embraced the belief that their child is alive. They have spent months, if not years, fighting legal and medical battles in support of that belief. So.... they "win" their case and they now have a dead child on permanent somatic support. Because of their deeply held conviction that the child is alive, they probably can't ever withdraw the somatic support — because that would be "killing" their child.

I don't mean this in a legal or medical sense — I mean it in the context of the parents' belief that the child is still alive. In order to wage the legal/medical battle and see it through to a "successful" conclusion, they have to have completely internalized their belief that the child is alive. The more they fight for it, the more deeply they will hold to that belief. I don't know how long a dead body can be kept in "good condition" via somatic support, but I don't think the parents will ever be able to let go of their deeply held conviction and admit the child is dead.

 

[nrdsb4]

Sadly, when the parents "win" in a case like this (think Jahi McMath) — tthey have now put themselves in such a terrible situation. They have embraced the belief that their child is alive. They have spent months, if not years, fighting legal and medical battles in support of that belief. So.... they "win" their case and they now have a dead child on permanent somatic support. Because of their deeply held conviction that the child is alive, they probably can't ever withdraw the somatic support — because that would be "killing" their child.

I don't mean this in a legal or medical sense — I mean it in the context of the parents' belief that the child is still alive. In order to wage the legal/medical battle and see it through to a "successful" conclusion, they have to have completely internalized their belief that the child is alive. The more they fight for it, the more deeply they will hold to that belief. I don't know how long a dead body can be kept in "good condition" via somatic support, but I don't think the parents will ever be able to let go of their deeply held conviction and admit the child is dead.

There is a case in the literature involving a brain dead boy whose heart was kept functioning by somatic support for about 20 years.

This is a really scary path they are going down here. If resources were unlimited, okay, but that's just not the case.

I would be completely and entirely broken if this happened to my child, so I have compassion for these folks. I don't blame them for hanging on; it's the recent court decisions which are to blame for keeping these patients in limbo and their families pulled in indefinitely as well.

 

[nrdsb4]

Sadly, the headlines for these 2 stories are part of the serious problem we have nationally with so many people having a poor understanding of brain death, and a mistrust of healthcare and professionals.

The headlines imply that the child is "alive" and on "life support", and that the evil hospital wants to "kill" the child. Life support is a lay term, not a medical term, and means vastly different things to different people. A more correct term is "somatic support" or "organ support". But that doesn't pull at people's heartstrings and make them mad at the evil hospitals and evil health care professionals that they want to portray as "killing" this beautiful child.

The media, with their irresponsible reporting and euphemisms, is tremendously responsible, IMO, for the state of confusion that so many citizens are in regarding what brain death "is" and "is not."

The media, IMO, very irresponsibly and unethically, encourages mistrust of the diagnosis of brain death withe the slant they put in their stories about these unfortunate families. And they encourage the NEXT family to ligitgate. They insert doubt into every story like this, and insinuate (or out right accuse) healthcare professionals of lying, malpractice, and misdiagnosis, without a shred of REAL factual or scientific evidence.

It's very frustrating for health professionals and hospitals, because they cannot correct misinformation in the media. Privacy laws prohibit hospitals and professionals from commenting on a particular case, so that leaves only the families and lawyers to control the narrative consumed by the public. And they always make the hospitals and medical professionals out to be evil bad guys who just want to "kill" innocent babies and kids. The whole media thing sickens me to my core, it's so irresponsible and unethical. IMO.

Agree COMPLETELY.

 

[Lilibet]

Sadly, when the parents "win" in a case like this (think Jahi McMath) — tthey have now put themselves in such a terrible situation. They have embraced the belief that their child is alive. They have spent months, if not years, fighting legal and medical battles in support of that belief. So.... they "win" their case and they now have a dead child on permanent somatic support. Because of their deeply held conviction that the child is alive, they probably can't ever withdraw the somatic support — because that would be "killing" their child.

I don't mean this in a legal or medical sense — I mean it in the context of the parents' belief that the child is still alive. In order to wage the legal/medical battle and see it through to a "successful" conclusion, they have to have completely internalized their belief that the child is alive. The more they fight for it, the more deeply they will hold to that belief. I don't know how long a dead body can be kept in "good condition" via somatic support, but I don't think the parents will ever be able to let go of their deeply held conviction and admit the child is dead.

BBM

Excellent post. The core belief of the parents in these cases is immovable, regardless of any amount of persuasive education provided by physicians. Judging just from Jahi's support system, there is also a firm belief that God can and will perform a miracle. In their view, it seems that keeping the child on somatic support shows the depth of their faith. Taking the child off support could feel like a loss of faith and disobedience to God. That's huge, whether we agree or disagree.

Although I don't agree in this case, I do understand strongly held, unwavering beliefs and faith. Physicians have no real choice but to respect the depth of those beliefs, while at the same time, keeping their own integrity as physicians and preserving medical resources for those who can be helped. Parents also need to respect the position of the physicians, and not expect them to violate their conscience and standard medical practice. So respect is key, even when positions won't budge.

But parents cannot expect insurance to pay for or hospitals to maintain somatic support or perform procedures on someone medical professionals view as dead. Someone upthread mentioned that faith-based organizations can fill in the gap and support the goals of these parents. That is really as it should be, since this is an issue of faith, not medical care. JMO

 

[SophieRose]

A lot more to the story. It also says he was at home when he had the asthma attack. Article have said the parents lived in Vacaville, he was previously treated iat Kaiser Vacaville. So why was he taken to Sacramento's Mercy General Hospital, 40 minutes away? And all of his attacks would be serious.

http://www.sacbee.com/news/local/health-and-medicine/article75472347.html

Multiple hospitals have been involved in Israel’s care. According to court papers filed by Kaiser’s lawyers, Israel was treated at Kaiser Vacaville’s emergency department for a severe asthma attack about four months ago. In January, the filing said, the child’s parents and county Child Protective Services were informed that Israel’s medical history and the failure to comply with medical recommendations were weakening Israel’s lung capacity to the point where he might be unable to recover from a severe bronchospasm.

In another court declaration, Dr. Paul Byrne, a non-Kaiser pediatrician who examined Israel’s medical records on behalf of Fonseca and visited Israel several times in the hospital, said the 2-year-old suffers from hypoxia (lack of oxygen supply to body tissues) and hypothyroidism, a deficiency in thyroid hormones. He was also being treated for diabetes insipidus, which causes extreme thirst and heavy urination.

 

[Donjeta]

Is that the same Paul Byrne who was involved in Jahi McMath's case?

 

[Lilibet]

A lot more to the story. It also says he was at home when he had the asthma attack. Article have said the parents lived in Vacaville, he was previously treated iat Kaiser Vacaville. So why was he taken to Sacramento's Mercy General Hospital, 40 minutes away? And all of his attacks would be serious.

http://www.sacbee.com/news/local/health-and-medicine/article75472347.html

Multiple hospitals have been involved in Israel’s care. According to court papers filed by Kaiser’s lawyers, Israel was treated at Kaiser Vacaville’s emergency department for a severe asthma attack about four months ago. In January, the filing said, the child’s parents and county Child Protective Services were informed that Israel’s medical history and the failure to comply with medical recommendations were weakening Israel’s lung capacity to the point where he might be unable to recover from a severe bronchospasm.

In another court declaration, Dr. Paul Byrne, a non-Kaiser pediatrician who examined Israel’s medical records on behalf of Fonseca and visited Israel several times in the hospital, said the 2-year-old suffers from hypoxia (lack of oxygen supply to body tissues) and hypothyroidism, a deficiency in thyroid hormones. He was also being treated for diabetes insipidus, which causes extreme thirst and heavy urination.

BBM

Sadly, it's possible that guilt over their noncompliance may be driving the parents' in their efforts to obtain somatic support. It's understandable.

The article explains why Israel was transferred from U.C. Davis Pediatric Intensive Care to Kaiser. I may have missed it previously but it was to obtain a second opinion about brain death. The Kaiser Hospital in Roseville is affiliated with U.C. Davis Medical School as a teaching hospital (Wikipedia link below).

In the court documents, Kaiser states that Israel had an asthma attack at home on April l. He was taken to Mercy General Hospital’s emergency room, where he was intubated and transferred to the pediatric intensive care unit at UC Davis Medical Center. The ventilator tube was removed the next day and, shortly thereafter, he had a second asthma attack and suffered cardiorespiratory arrest. He was again intubated, placed on a ventilator, and treated with a pump to circulate blood through an artificial lung back into his bloodstream.
On April 4, brain scans showed “near total absence of blood flow into the bilateral cerebral hemispheres.” Eight days later, on April 12, Kaiser Roseville admitted Israel, with his parent’s consent, for a second brain death examination.
BBM
http://www.sacbee.com/news/local/health-and-medicine/article75472347.html

He had certainly gotten the excellent care at U. C. Davis Pediatric Intensive Care.* It's state of the art. http://ucdmc.ucdavis.edu/children/clinical_services/PICU/

Israel may have received this specialized treatment at Davis. JMO
http://ucdmc.ucdavis.edu/children/clinical_services/PICU/ECLS_services.html

*OT Disclaimer: I probably have a slight bias toward U.C. Davis Medical Center which is associated as a teaching hospital with the U.C. Davis Medical school. I was a Cal Aggie when the medical school opened in 1966. My job in the Library involved checking in periodical publications for the brand new medical school and making sure they received them. So I have fond memories and a soft spot in my heart for anything Davis related. My loyalty isn't misplaced, however. According to Wikipedia, both the medical school and the medical center have excellent reputations.

https://en.m.wikipedia.org/wiki/UC_Davis_School_of_Medicine
https://en.m.wikipedia.org/wiki/UC_Davis_Medical_Center

 

[MelmothTheLost]

In January, the filing said, the child’s parents and county Child Protective Services were informed that Israel’s medical history and the failure to comply with medical recommendations were weakening Israel’s lung capacity to the point where he might be unable to recover from a severe bronchospasm.

Isn't this exactly what happened in the Jahi McMath case? My understanding of the case is that when she came round from the anaesthetic her parents were told very clearly to give her nothing to eat but they went ahead with feeding her ice cream. This dislodged the blood clots in her throat which in turn led to a catastrophic bleed.

If so, there seems to be a pattern here of harm caused by the parents and their subsequent failure or refusal to face up to the consequences of their own behaviour.

In another court declaration, Dr. Paul Byrne, a non-Kaiser pediatrician who examined Israel’s medical records on behalf of Fonseca and visited Israel several times in the hospital, said the 2-year-old suffers from hypoxia (lack of oxygen supply to body tissues) and hypothyroidism, a deficiency in thyroid hormones. He was also being treated for diabetes insipidus, which causes extreme thirst and heavy urination.

I hate to say it but it sounds as though this was a child with multiple serious health issues, one of which was going to kill him fairly young. A generation ago he would probably have died long before he did.

 

[MelmothTheLost]

Sadly, it's possible that guilt over their noncompliance may be driving the parents' in their efforts to obtain somatic support. It's understandable.

Agreed wholeheartedly. It's understandable but it shouldn't be pandered to.

 

[Lilibet]

Isn't this exactly what happened in the Jahi McMath case? My understanding of the case is that when she came round from the anaesthetic her parents were told very clearly to give her nothing to eat but they went ahead with feeding her ice cream. This dislodged the blood clots in her throat which in turn led to a catastrophic bleed.

If so, there seems to be a pattern here of harm caused by the parents and their subsequent failure or refusal to face up to the consequences of their own behaviour.

I hate to say it but it sounds as though this was a child with multiple serious health issues, one of which was going to kill him fairly young. A generation ago he would probably have died long before he did.

Yes, the story/rumor was that the family fed Jahi a hamburger after surgery. Whatever they gave her did dislodge the clots leading to bleeding and cardiac arrest. So there is a pattern in both cases. When you have a sick child you need to do everything you can to follow medical instructions. Israel's asthma attack at home was the last straw.

Agreed wholeheartedly. It's understandable but it shouldn't be pandered to.

Exactly. We can understand their feelings and have compassion, but the answer is still "No." If they can get supporters to arrange and pay for Israels care, as long as a death certificate is issued, there will probably be less backlash against the hospitals if they just send him on his way. JMO

 

[SophieRose]

Here's one of the court documents filed by the family and what the mother says happened at the hospitals. And yes, that is the Paul Byrne known from Jahi's case.

http://thaddeuspope.com/images/Fons...28-16_Declarations_Snyder,_Byrne,_Fonseca.pdf

 

[SophieRose]

BBM

Sadly, it's possible that guilt over their noncompliance may be driving the parents' in their efforts to obtain somatic support. It's understandable.

The article explains why Israel was transferred from U.C. Davis Pediatric Intensive Care to Kaiser. I may have missed it previously but it was to obtain a second opinion about brain death. The Kaiser Hospital in Roseville is affiliated with U.C. Davis Medical School as a teaching hospital (Wikipedia link below).

In the court documents, Kaiser states that Israel had an asthma attack at home on April l. He was taken to Mercy General Hospital’s emergency room, where he was intubated and transferred to the pediatric intensive care unit at UC Davis Medical Center. The ventilator tube was removed the next day and, shortly thereafter, he had a second asthma attack and suffered cardiorespiratory arrest. He was again intubated, placed on a ventilator, and treated with a pump to circulate blood through an artificial lung back into his bloodstream.
On April 4, brain scans showed “near total absence of blood flow into the bilateral cerebral hemispheres.” Eight days later, on April 12, Kaiser Roseville admitted Israel, with his parent’s consent, for a second brain death examination.
BBM
http://www.sacbee.com/news/local/health-and-medicine/article75472347.html

He had certainly gotten the excellent care at U. C. Davis Pediatric Intensive Care.* It's state of the art. http://ucdmc.ucdavis.edu/children/clinical_services/PICU/

Israel may have received this specialized treatment at Davis. JMO
http://ucdmc.ucdavis.edu/children/clinical_services/PICU/ECLS_services.html

*OT Disclaimer: I probably have a slight bias toward U.C. Davis Medical Center which is associated as a teaching hospital with the U.C. Davis Medical school. I was a Cal Aggie when the medical school opened in 1966. My job in the Library involved checking in periodical publications for the brand new medical school and making sure they received them. So I have fond memories and a soft spot in my heart for anything Davis related. My loyalty isn't misplaced, however. According to Wikipedia, both the medical school and the medical center have excellent reputations.

https://en.m.wikipedia.org/wiki/UC_Davis_School_of_Medicine
https://en.m.wikipedia.org/wiki/UC_Davis_Medical_Center

One of the life sites said that the family requested Israel be sent to Kaiser.

https://www.lifesitenews.com/news/parents-fighting-hospital-to-keep-2-year-old-son-on-life-support

At the family’s request Israel was moved April 12 to Kaiser Permanente Roseville Medical Center, because they were concerned about his care at UC Davis, and his mother thought he would need to be treated there due to the insurance she carried.

 

[MelmothTheLost]

and his mother thought he would need to be treated there due to the insurance she carried.

Huh? Medical insurance covers warehousing of dead children because their parents can't cope with reality?

The insurance would actually pay out for this?

 

[MelmothTheLost]

I must admit to being somewhat bemused by all this.

Israel was moved to the Kaiser Permanente Roseville Medical Center some 3 weeks ago with a view to undergoing a second set of tests for brain death, so what has happened in the meantime?

Either brain death has been confirmed or it hasn't.

If it has, why is the body still there?

If it hasn't, is Dr Kaiser saying the first set of doctors and tests were wrong and the child is merely in a coma or vegetative state?

This is all really, really creepy.

 

[sonjay]

One of the life sites said that the family requested Israel be sent to Kaiser.

https://www.lifesitenews.com/news/parents-fighting-hospital-to-keep-2-year-old-son-on-life-support

At the family’s request Israel was moved April 12 to Kaiser Permanente Roseville Medical Center, because they were concerned about his care at UC Davis, and his mother thought he would need to be treated there due to the insurance she carried.

If I had to guess, I'd guess that the concept of brain death had already come up at UC-Davis, and the family asked for the transfer because they didn't like what they were hearing.

I suspect the folks at UC-Davis are relieved that they're not the ones in the middle of this circus. I have to wonder if these cases will result in doctors becoming reluctant to start life-support protocols in certain cases.

 

[sonjay]

I must admit to being somewhat bemused by all this.

Israel was moved to the Kaiser Permanente Roseville Medical Center some 3 weeks ago with a view to undergoing a second set of tests for brain death, so what has happened in the meantime?

Either brain death has been confirmed or it hasn't.

If it has, why is the body still there?

If it hasn't, is Dr Kaiser saying the first set of doctors and tests were wrong and the child is merely in a coma or vegetative state?

This is all really, really creepy.

Brain death has been confirmed.

But the parents believe in the healing power of God, and so they don't want to withdraw somatic support and trust in God to heal their deceased child.

 

[MelmothTheLost]

Brain death has been confirmed.

Sorry, just to confirm: do you mean that the second facility has also diagnosed brain death, or simply that the first one did so. "Confirmed" could be read either way.

But the parents believe in the healing power of God, and so they don't want to withdraw somatic support and trust in God to heal their deceased child.

But they don't believe in God sufficiently to turn the machines off.

I have to wonder if these cases will result in doctors becoming reluctant to start life-support protocols in certain cases.

Yes, very much so. Otherwise medical facilities and their staff are quickly going to become snarled up in a spider's web of parental refusal to face reality and the greed of dodgy lawyers.

 

[K_Z]

Wow-- I'm picking up more details on this sad story as they trickle out. As with the massive misinformation in the Jahi McMath case ("routine tonsillectomy"), this was no "minor" medical situation with Israel that spiraled out of control. Israel was a very, very sick little boy, and doctors were VERY worried about his mother's compliance with medical care prior to admission for the current medical catastrophe. Another article discusses involvement of CPS over these concerns.

An article upthread refers to Israel being helped with an "artificial lung" during his ICU crisis. What this is referring to is ECMO (extracorporeal membrane oxygenation). It's a last ditch effort, very intensive therapy in situations where the lungs are so catastrophically damaged that they can't exchange oxygen and carbon dioxide. At best, only about half the kids put on this (for various diagnoses) survive. This therapy, ECMO, is not available in smaller or community hospitals; it is a highly specialized therapy typically only available in tertiary care facilities (the most highly technical ICU's).

Truly, this unfortunate child was given every possible chance to survive. That's what I said upthread, that I am extremely reluctant to ever criticize health professionals in high profile cases like these when all we have is the family's perspective, and no medical records or expert interpretation.

Here is an overview of ECMO:

https://en.wikipedia.org/wiki/Extracorporeal_membrane_oxygenation

http://emedicine.medscape.com/article/1818617-overview

Also, I noted that many articles about the court hearing extending the TRO to May 11 only chose to print the first TWO sentences of the Kaiser hospital statement. Many of the articles are attempting to give the impression that the mother and father are appealing to the courts using "religious beliefs" as the basis for asking for organ support to be maintained. But actually, what this statement from the hospital tells us is that they challenged the process of diagnosing brain death as flawed, and alleged it was not in accordance with California law. So again, media articles are trying mightily to slant the information presented to the public to persuade the public to take a certain view of what's going on.

(BBM)

Dr. Chris Palkowski, chief of staff at Kaiser Permanente Roseville Medical Center, issued the following statement on Monday’s court hearing:

"Our hearts go out to this family as they cope with the irreversible brain death of their son, and we continue to offer our support and compassion to them. We will continue to comply with orders issued by the Federal court.

Last week, the California Superior Court ruled that Kaiser Permanente Roseville complied with all state requirements (under California Health and Safety Code 7180 and 7181) that specify what steps physicians and hospitals must take to determine brain death. Israel's parents asked the California Superior Court to rule that Kaiser Permanente's procedures for determining brain death did not comply with the law. The Court ruled that Kaiser Permanente fully complied with the state law. The Court also ruled that Kaiser Permanente fully satisfied the law's requirement that a hospital provide a reasonable amount of time after determining brain death, to allow the family to come together.

California's law is modeled on one that has been adopted in nearly all the states in the nation. It's called the Uniform Determination of Death Act and applies to all, regardless of religion. At Monday’s hearing, the family asked the Federal Court to challenge this California law, and rule that federal law provides an exception in the case of a religious belief that brain death does not exist."

http://fox40.com/2016/05/02/toddler-on-life-support-granted-extra-time-by-federal-judge/

It appears that there are two separate challenges-- one in CA state court, and one in Federal court.

The media, in addition to omitting this information in the court filings, also "conveniently" left out any references to how desperately sick and fragile this child was PRIOR to April 1, when the current medical catastrophe began. Child protective services were involved with this family, because medical personnel/ doctors were very concerned about this child's management/ mother's compliance at home. That says a whole lot to me.

 

[sonjay]

<snip>
The media, in addition to omitting this information in the court filings, also "conveniently" left out any references to how desperately sick and fragile this child was PRIOR to April 1, when the current medical catastrophe began. Child protective services were involved with this family, because medical personnel/ doctors were very concerned about this child's management/ mother's compliance at home. That says a whole lot to me.

Snipped for brevity.

Not only are the media reports leaving out any references to the child's condition prior to this incident, they are actively promoting a different perspective:

The earliest reports said this:
Israel Stinson was healthy and happy one minute and hooked up to a ventilator the next.

http://sacramento.cbslocal.com/2016...eclared-brain-dead-convinced-hes-still-alive/