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

[momrids6]

CHILD ORGAN DONOR

Girl who died on Christmas Eve becomes organ donor

(Information in the following story is from: The Modesto Bee, http://www.modbee.com)

DAVIS, Calif. (AP) — Amid the unspeakable grief of losing a child on Christmas Eve, a Central California couple has made the decision to donate their daughter's organs so other parents can avoid the kind of pain they are experiencing.

Manteca resident Tony Izzo tells The Modesto Bee that doctors at UC Davis Medical Center on Thursday were harvesting the heart and other organs from the body of his 9-year-old daughter, Mariah.

The girl suffered catastrophic brain injuries on Monday while riding in a small SUV being driven by her aunt. A larger SUV slammed into the vehicle while it was stopped at a red light.

Mariah was pronounced dead at 9 p.m. on Christmas Eve.

Her father says her organs will go to at least five other people. He says Mariah is his little hero.

http://www.am1380theanswer.com/article.aspx?id=ea0b5b6e-5dfa-4262-8866-d5e8b1b0ec9b&catid=-999

 

[SwampMama]

Ok, I tried to type while listening to the live announcement from her Uncle and lawyer.

Her uncle reported that they had a good Christmas and may have found a place that will take Jahi and care for her. They need Children's hospital to cooperation to help them make the transfer. A procedure needs to take place before she can be moved. The family wants her moved as soon as possible and need Children's hospital to work as quickly as possible to help them get this done before Dec 30. It will be a trach tube, and a gastric tube for nutrition. They feel the hospital should do this to help them get Jahi out of there. Hospital is speaking with attorneys to see what they will do to get this done. They feel that Children's wants Jahi to leave their hospital in a body bag and they will get Jahi out of there but they need the hospital to cooperate with getting the procedures done so she can be moved to her new place.

New place in greater bay area, they are not ready to release the name, they are more than willing to accept Jahi, her insurance will pay for her care there, they (insurance) have not put a time limit on Jahi and she remains covered by insurance as long as their is a treatment to do, will cost less than care at children's. There was prior opportunity to move her to new york,

According to her family -her blood pressure is now staying normal, she moved her shoulders, she is trying to breathe on her own

 

[SwampMama]

This is not the course that I would hvae chosen, but this is not my child. Jahi's mother is in obvious grief, guilt and denial so this is probably the best option for her as she comes to term with what has happened to Jahi.

I do not believe there will be any miracle (because the medical evidence supports that Jahi is dead effectively) and Jahi will likely pass away within a year (or sooner) from some sort of organ failure or infection or pneumonia. But this may be what Jahi's mother needs to be able to come to terms with Jahi's death. She needs time, she needs for her very wounded heart and soul to heal a bit from this sudden tragedy and be able to get some time and perspective to help to come to terms with this.

Medically speaking, when if she dies of pneumonia or organ failure, or even a medical mistake by the new hospital, will Children's still be liable for her death? I figure Jahi's mom will sue, and she should to get the true answers but she also needs to accept them when she gets them. But wouldn't her suit be more successful if Jahi had died (not living in limbo in a brain dead state) and the autopsy could have helped to point out what went wrong when the brain death occurred?

 

[momrids6]

She has been legally deceased since the 12th or 13th of December. I believe the hospital is most likely unable to perform surgery.

 

[SophieRose]

http://www.contracostatimes.com/news/ci_24799118/jahi-mcmath-2-years-ago-girl-wound-up

Two years before Jahi McMath's tonsillectomy went tragically awry, another Bay Area girl went to Children's Hospital Oakland for tonsil surgery to treat her sleep apnea and left with catastrophic brain damage.

Rebecca Jimenez of Rodeo, once a smart and vivacious elementary school student, can no longer walk, talk or communicate with her family following her Sept. 6, 2011 elective tonsillectomy and adenoidectomy, the most common surgery with general anesthesia for kids in America.

Rebecca and her parents sued the hospital, its anesthesiology unit, the surgeon and anesthesiologist Dec. 9, 2011, for medical negligence and settled with the latter three for $4.4 million, according to court documents. They reached their final settlement, with the hospital, on Nov. 26, but the amount has not been announced.

Part of the money has been placed into a trust to pay for 24-hour-a-day care for Rebecca, 11, who, unlike Jahi, shows some brain activity.

 

[SwampMama]

She has been legally deceased since the 12th or 13th of December. I believe the hospital is most likely unable to perform surgery.

I think the alternative was to ask Children's Hosp (aka CHO) for cooperation and allow an independent doctor the privileges/ability/space/authority/ to be able to do the surgery so Children's doesn't have to. That was simply alluded to, the words above are mine based upon what I heard (or how i heard it). I could be wrong (and it wouldn't be the first time, lol).

Jahi's family feels that Children's hospital wants Jahi gone, and they were fine with her leaving in a body bag so they ought to do the right thing and allow her what she need to leave "alive" and continue her life in her new home. (Again, all my words but it is what I got from what the family said).

 

[SophieRose]

I think the alternative was to ask Children's Hosp (aka CHO) for cooperation and allow an independent doctor the privileges/ability/space/authority/ to be able to do the surgery so Children's doesn't have to. That was simply alluded to, the words above are mine based upon what I heard (or how i heard it). I could be wrong (and it wouldn't be the first time, lol).

Jahi's family feels that Children's hospital wants Jahi gone, and they were fine with her leaving in a body bag so they ought to do the right thing and allow her what she need to leave "alive" and continue her life in her new home. (Again, all my words but it is what I got from what the family said).

What outside doctor wants to touch that can of worms? Maybe 80-year-old Dr Paul Byrne. And could her body even "survive" the surgery?

 

[momrids6]

I think the alternative was to ask Children's Hosp (aka CHO) for cooperation and allow an independent doctor the privileges/ability/space/authority/ to be able to do the surgery so Children's doesn't have to. That was simply alluded to, the words above are mine based upon what I heard (or how i heard it). I could be wrong (and it wouldn't be the first time, lol).

Jahi's family feels that Children's hospital wants Jahi gone, and they were fine with her leaving in a body bag so they ought to do the right thing and allow her what she need to leave "alive" and continue her life in her new home. (Again, all my words but it is what I got from what the family said).

you were correct- the same information is here:

http://bigstory.ap.org/article/family-brain-dead-calif-girl-weighs-aid-offers

 

[momrids6]

The problem with waiting for the heart to stop following brain death is that it can go on beating for several days, occasionally for weeks, during which time other organs fail and the extremities may begin to decompose. To continue artificial ventilation is therefore regarded as both futile and undignified. In many countries it has been accepted that when the brain is dead the person is dead; in some jurisdictions laws have been enacted to acknowledge this, but in others it has been considered unnecessary.

Read more: http://www.answers.com/topic/brain-death#ixzz2odp5H6iC

 

[SwampMama]

http://www.nbcbayarea.com/news/loca...g-to-Keep-Girl-on-Life-Support-237374891.html

David Durand, the hospital's chief of pediatrics, on Thursday released the following statement in response to the family's request:

Children’s Hospital Oakland continues to offer its sympathy and support to the family over the recent death of Jahi McMath. We are aware that the family’s attorney has stated the family hopes to transfer Jahi’s body to another facility. However, he has refused to identify the facility to which they hope to transfer Jahi’s body. The family’s attorney has stated that multiple surgical procedures need to be performed on Jahi’s body before this possible transfer can be completed.

Judge Grillo was very clear on Tuesday December 24. He ruled Jahi McMath to be deceased and instructed the hospital to maintain the status quo. Judge Grillo did not authorize or order any surgical procedures or transfer to another facility. Children’s Hospital Oakland does not believe that performing surgical procedures on the body of a deceased person is an appropriate medical practice. Children’s Hospital Oakland continues to extend its wishes for peace and closure to Jahi McMath’s family.

 

[SwampMama]

So, to me, it looks like the family is going to have to file an appeal to a higher court, before Dec 30. Sad that the family is going thru so much struggle for such a hopeless case. From what i understand, being brain dead, with no blood flow to the brain, her brain will begin to deteriorate (the sources I read said "decompse").

Another source also said that since her brain is dead, that there is no way that she could process anything her family says because you need brain function to turn sounds into meaningful words.

If any of our medically knowledgeable people here know, can you answer any of the following questions? I have tried to find answers but there is so much to read and most of it does not focus on these questions.

Jahi's family reported that her shoulder moved. Is this even possible? I don't think her body is capable of any voluntary movement but are there any involuntary body process that could account for this?

Also, in addition to the above question.. Could this reported shoulder movement simply be the body beginning to contract, as we often see brain damaged, persistent vegetative patients do? Will this happen to her?

What is the longest that anyone has lived on life support while brain dead and do you know the circumstances why they were kept that way for so long. I understand the cases where pregnant women were kept alive, but they were allowed to be removed from life support after the birth. Are there any other stories of long term life support after brain death?

Being brain dead, are her eyes fixed and dilated, not responding to light or movement at all?

Jahi's mother reported that her blood pressure went up when she listened to music (or when her mom talked, i forget which). I was under the impression that the ability to regulate blood pressure was in the brain (the lower part, I think) so is it even possible that her blood pressure or heartbeat could respond to voices or music. Would they respond to painful stimuli or does she not even have the ability to process pain?

To continue her life support long term, what interventions will be needed. Ventilation and nutrition, of course but what else? Drugs to regulate blood pressure? What other meds or assistance.

If on long term support with nutrition, obviously her body would create waste products from that nutrition (urine, feces). It seems obvious she will be on a catheter but what will occur with her bowel process? Can her body/muscles even produce a bowel movement or would they have to intervene to remove such products from her body?

Sorry to ask so many questions. I just really want a clear understanding of all of this because i do intend on having conversations with family and friends about it. Thanks to our medical experts, you info has been very educational and helpful in understanding all of this.

 

[momrids6]

The pupillary reflex - the neurologist shines a light into the patient's eyes and sees if the pupils constrict. In a brain dead patient, the pupils will not respond.

The corneal reflex - the neurologist touches the patient's eyes with either a cotton swab or drop of water to see if the patient blinks. A brain dead patient will not blink.

The oculocephalic or "dolls eyes" reflex - the patient's head is moved from side to side to see if the eyes remain fixated on the examiner's face. A brain dead patient's eyes will not fixate.

The gag reflex - the back of the patient's throat is touched with a cotton swab, or a suction device may be used instead. Normal patients will gag or cough. A brain dead patient will not.

Cold caloric testing - In this test, ice water is squirted into the patient's ear. In normal and awake patients, this causes a sensation of nausea, since it tricks the inner ear into believing the patient is spinning in a circle. As a result, the eyes will automatically move in the opposite direction to try to keep vision steady. A brain dead patient's eyes will not move.

http://neurology.about.com/od/Symptoms/a/Understanding-Brain-Death.htm

 

[SwampMama]

I am assuming that this will now go to a higher court for appeal and perhaps then, we will get some of the facts of this case from officially documents events and medical records. No offense but i cannot take her family's word that Jahi "moved her shoulder", is "trying to breathe" or responds to music by an increase in blood pressure. With no brain function, would she even be able to remember her favorite songs, much less process them?

It will be interesting to see if her family has any proof or documentation of the movement and signs of life that they say they see. I assume they have camera/video capabilities on their phones and would be able to document such momentous things.

This is why I hoped that Jahi would be on a recorded video monitor 24/7. But perhaps that would be considered an invasion of privacy by her family and not allowed? But if they truly feel they have seen such things happen, then I would think they would want 24/7 monitoring to catch every single possible movement and to prove those things they have claimed that happened.

I feel bad not taking the word of her family in these matters but as we know, they have had a less than completely factual account of this matter such as Jahi being perfectly healthy before surgery (obviously untrue due to her excess weight, extreme apnea,etc). This is not said in any way to criticize her family. As family who love her, they want to see these things so bad, so I can't be really harsh on them for thinking that there are signs of recovery.

 

[meanmaryjean]

While I cannot speak to each and every one of your questions: I do, sadly, have considerable experience with this as I work in a Pediatric ICU.
As far as the 'surgical procedures' the family/ facility wants: That would be a tracheostomy and a gastrostomy tube.

Tracheostomy is an artificial airway made of plastic or silicone placed through an incision in the neck. The ventilator connects to this tube. It is changed out on a weekly basis, and the patient wears a soft harness-type device around the back of their neck to hold it in place. When our ENT surgeons are doing a 'fresh' trach, there are limitations placed on how much the patient can move for the first 5-7 days, in order for the stoma (actual opening in the neck) to heal.

Patients who are dependent on a ventilator are at high risk for pneumonia, as she cannot effectively clear her own secretions via cough as you and I can, and by virtue of her immobility. So they must be suctioned by means of a plastic tube inserted into the airway every two to four hours, round the clock.

A gastrostomy tube is a device placed through the wall of the abdomen that allows liquid feeding solutions to be delivered directly into the stomach or small intestine (depending on the need). The feeding is delivered by means of a pump on a continuous basis.

Contrary to popular belief, she would NOT have a catheter, but wear - for lack of a better term - a diaper, which would be changed every few hours. The muscles in the bowel likely are still working- and so she would have regular bowel movements, with perhaps an assist of a daily suppository. As you might guess, this 'diaper changing' is no easy task given her size. She would also continue to have menstrual cycles at the appropriate age.

She would need to be turned and repositioned every two hours round the clock to prevent skin breakdown, but with her immobility, it could happen anyway.

Another HUGE risk is for the development of blood clots in her legs- again caused by immobility.

As far as her family seeing movement- I cannot speak to this directly, but I HAVE seen family members misinterpret a patient's arm of leg sliding off of a pillow used to position them as 'movement'.

I hope this helps you understand some of what will be required to care for her IF she were to be transferred to another facility. I am curious about her BP- and wonder if she is on pressors (IV meds which are used to artificially raise BP when the brain, kidneys or heart can no longer do so).

Tragic situation.

 

[SophieRose]

Here are two sub-acute care facilities for children, located about 50 miles from Oakland.

Subacute Saratoga Children’s Hospital along with its sister hospital, Children’s Recovery Center, are the only two state certified pediatric subacute hospitals in Northern California.

http://subacutesaratoga.com/services/

http://www.pedisubacute.com/about/faq.html

 

[Linda7NJ]

I'm wondering if the brain damage was caused by a lack of o2 or from massive swelling.
I'm confused as to why a shunt wasn't used to ease the pressure on her swelling brain.

I have a friend who suffered a severe head injury in a car crash. A bolt type shunt was used to ease the pressure within her skull ...and when that wasn't enough ...a piece of her skull was removed. She was on a ventilator, a short time later she had the trac. She was in a coma for quite some time and her parents were told at first her prognosis was grave and they didn't believe she would survive 24 hrs... Last rights were given and her parents were asked to donate her organs. Then the next 48..72.. They were told she would likely be in a persistent vegetative state. For whatever reason, when she began to improve to the point of opening her eyes when spoken to. She was placed in a medically induced coma.
There were complications with blood pressure regulation & fevers and pneumonia for quite awhile. She spent close to two months in the trauma unit....many more in ICU..then a regular room and finally months of rehab at a live in facility for head injuries people.

( side note... I met a teacher there that tried to kill himself, gunshot .. Put it in his mouth. He could recall his entire life up until the day he did it..,completely lost the ability to form any new memories. Every 10 minutes he reintroduced himself..,,every 10 minutes he was again told where he was, he'd ask everyone at the hospital again and again what their name was, it was fascinating and incredibly sad. He did remember his wife and children...but every 10 minutes it was like they had just arrived. )

Fast forward...she made a full recovery with very mild deficits that no one would ever notice unless you knew her before the accident. The biggest one is her voice is different, softer and kinda whispery. That was the result of being on the ventilator too long....they didn't believe she'd survive the procedure, so they waited a bit.


Sent from my iPhone using Tapatalk 2

 

[katydid23]

http://www.nbcbayarea.com/news/loca...g-to-Keep-Girl-on-Life-Support-237374891.html

David Durand, the hospital's chief of pediatrics, on Thursday released the following statement in response to the family's request:

Children’s Hospital Oakland continues to offer its sympathy and support to the family over the recent death of Jahi McMath. We are aware that the family’s attorney has stated the family hopes to transfer Jahi’s body to another facility. However, he has refused to identify the facility to which they hope to transfer Jahi’s body. The family’s attorney has stated that multiple surgical procedures need to be performed on Jahi’s body before this possible transfer can be completed.

Judge Grillo was very clear on Tuesday December 24. He ruled Jahi McMath to be deceased and instructed the hospital to maintain the status quo. Judge Grillo did not authorize or order any surgical procedures or transfer to another facility. Children’s Hospital Oakland does not believe that performing surgical procedures on the body of a deceased person is an appropriate medical practice. Children’s Hospital Oakland continues to extend its wishes for peace and closure to Jahi McMath’s family.

Imo, if this new facility is serious about taking Jahi, then they will agree to take responsibility for these surgeries. That will be the least of their problems, imo.

I do not blame the Oakland Hospital for rejecting the request to operate. Doing so would be in direct opposition to their position that the patient is deceased.

 

[K_Z]

An example of neuroimaging of brain perfusion (no intracranial blood flow) in brain death with a beating heart.

"A picture is worth a thousand words."

http://www.mypacs.net/cases/BRAIN-DEATH-7751102.html

 

[K_Z]

Imo, if this new facility is serious about taking Jahi, then they will agree to take responsibility for these surgeries. That will be the least of their problems, imo.

I do not blame the Oakland Hospital for rejecting the request to operate. Doing so would be in direct opposition to their position that the patient is deceased.

BBM.

Sub-acute facilities typically do not have operating room capability, OR staff, anesthesia staff, or in-house surgeons. That is why they requested the trach and PEG be done before transport.

Added for clarity:

Gastrostomy tube commonly referred to as a PEG- percutaneous endoscopic gastrostomy. "Feeding tube."

A brain dead patient may, or may not even absorb from tube feedings, if peristalsis or gut perfusion is altered (which is likely, causing an ileus), or the tube isn't placed in the perfect spot, or if the gut is dying from clots or lack of blood flow. When those things happen, the tube feed solution will pool in stomach or duodenum, and passively reflux up the esophagus and into the lungs. (Causing a nasty pneumonia from the high sugar content.)

Brain dead people who are going to be organ donors typically don't receive tube feedings before organ procurement. They can be optimized with IV fluids and meds.

 

[meanmaryjean]

I'm wondering if the brain damage was caused by a lack of o2 or from massive swelling.
I'm confused as to why a shunt wasn't used to ease the pressure on her swelling brain.

I have a friend who suffered a severe head injury in a car crash. A bolt type shunt was used to ease the pressure within her skull ...and when that wasn't enough ...a piece of her skull was removed. She was on a ventilator, a short time later she had the trac. She was in a coma for quite some time and her parents were told at first her prognosis was grave and they didn't believe she would survive 24 hrs... Last rights were given and her parents were asked to donate her organs. Then the next 48..72.. They were told she would likely be in a persistent vegetative state. For whatever reason, when she began to improve to the point of opening her eyes when spoken to. She was placed in a medically induced coma.
There were complications with blood pressure regulation & fevers and pneumonia for quite awhile. She spent close to two months in the trauma unit....many more in ICU..then a regular room and finally months of rehab at a live in facility for head injuries people.

( side note... I met a teacher there that tried to kill himself, gunshot .. Put it in his mouth. He could recall his entire life up until the day he did it..,completely lost the ability to form any new memories. Every 10 minutes he reintroduced himself..,,every 10 minutes he was again told where he was, he'd ask everyone at the hospital again and again what their name was, it was fascinating and incredibly sad. He did remember his wife and children...but every 10 minutes it was like they had just arrived. )

Fast forward...she made a full recovery with very mild deficits that no one would ever notice unless you knew her before the accident. The biggest one is her voice is different, softer and kinda whispery. That was the result of being on the ventilator too long....they didn't believe she'd survive the procedure, so they waited a bit.


Sent from my iPhone using Tapatalk 2

BBM: A shunt is needed when there is either an overproduction or an underabsorption of cerebro-spinal fluid. While this is one type of swelling in the brain- it is not the only type. (Generally, the swelling that can be ameliorated with a shunt happens more slowly than an anoxic injury.)

The swelling that occurs with acute anoxia (lack of oxygen to the brain) is swelling of the entire brain. As the skull is a closed cavity, and rigid -when this swelling occurs, the blood supply to the brain is almost completely squeezed off. If the swelling is bad enough, and unrelieved, the brain can actually herniate through the hole in the back where the brain stem and spinal cord pass.