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

[Sonya610]

Would the coroner's office even let them bring home a dead body, if they wanted to? In their view, is that a public health hazard -> dead body in a house, particularly with children?

Well apparently the coroner is allowing the body to be stored in the ICU around child patients!

Other people have done it before, I think the coroner/authorities would allow it just to prevent more drama.

And yes many states (not sure about CA) do allow families to prepare the dead at home and bury them (course that is handled in a timely manner).

 

[BetteDavisEyes]

Just heard on WWJ radio (CBS, Detroit) that Jahi will be removed from life support at 5:00PM (presumably PST) today unless another facility offers to expedite the transfer. No link available yet. I'm on my way to the gym but will post later.

Maybe the local report was from this CBS article yesterday:

...A judge's ruling will allow Children's Hospital Oakland to remove 13-year-old Jahi McMath from life support at 5 p.m. Monday unless her family appeals.

The family is now pinning its hopes on a New York facility after two California care homes withdrew offers to accept the teen...

http://www.cbsnews.com/news/time-running-out-for-jahi-mcmaths-family/

 

[jjenny]

Well apparently the coroner is allowing the body to be stored in the ICU around child patients!

Other people have done it before, I think the coroner/authorities would allow it just to prevent more drama.

And yes many states (not sure about CA) do allow families to prepare the dead at home and bury them (course that is handled in a timely manner).

The body itself isn't dead. It's the brain that is dead. But the body is not decaying or anything like that while the ventillator is on.

 

[jjenny]

Would the coroner's office even let them bring home a dead body, if they wanted to? In their view, is that a public health hazard -> dead body in a house, particularly with children?

The body isn't a health hazard since it's not actually dead. It's not decomposing while the ventillator is on. The heart is beating. Organs are working. The brain is dead.
The body is alive as long as ventillator is pumping oxygen into it.
Once the ventillator is turned off, the heart will stop soon thereafter and then the body will be dead.

 

[SwampMama]

I searched and searched this thread for the article, but my patience ran out and I'm just posting this from memory.

IIRC, early on, Jahi's mother stated about the original surgery that she was sorry she got a second opinion. I assume that meant that the first doctor recommended against surgery and she went to a second doctor who felt that the surgery could be successful.

If so, it's likely the more conservative doctor recommended CPap therapy at night and aggressive diet and exercise to bring Jahi's problems under control. That would have taken a long time and a great deal of persuasion on Mom's part.

Perhaps Jahi and/or her mother didn't want to go that route. Whatever the reason, they went to a second doctor to find a quicker solution to the problem in terms of immediate improvement in the apnea which would lead to more energy for Jahi and more of a willingness to exercise and diet.

If so, it is so easy to understand the mother's overwhelming guilt that she shouldn't have agreed to surgery over the more conservative treatment. Did she convince her daughter to undergo the surgery or did Jahi herself want to go that route.

http://www.mercurynews.com/breaking...t-divisive-battle-over-jahi-mcmath-is-mothers

Jahi's mom, speaking on the second opinion about getting the surgery. But she isn't clear on what the first opinion was.

"Everyone says it's not my fault," Winkfield said ......."But I drove her here. I made the appointment. I got the second opinion.

"It was me. It was all me," .......... "She didn't do it. She just followed what I said. So I feel like it would be so wrong of me to let them pull that plug on her."

Honestly, I don't get her reasoning that Jahi should be kept on life support to appease her guilt over consenting to the surgery. So she wants Jahi to remain on life support as her brain decomposes, having her diaper changed, cared for by strangers, being FORCED to breathe, not allowed to rest in peace?

Actually, it kinda freaks me out a bit, because in 2 other cases (of children being on life support with parents going to court to stop the hospital from removing life support), it was the parent who had caused that child's injuries that resulted in them being on life support.

Those parents had good reason to feel guilty and no doubt feared the murder charges they would face if the child went off life support.

But why does Jahi's mom feel so guilty? I can understand a small measure of guilt. We all wonder how we could have done something different when a loved one dies. But her guilt and denial are just off the charts.

Please understand, I am not being judgmental, I just think she must have a lot of other issues as well that must tie into this and I hope she can get the help to be able to cope with this and not completely lose it over Jahi's death. She has 3 other kids who need their mother, and stability more than ever.

 

[nightwatch]

I wanted to recommend this book to any interested about the issues and difficulty with breaking bad news to families. I served on a death notification team while I was in the military, and this book was recommended to me by my supervisor. I have found it to be a very useful reference, very thoughtful and respectful.



Amazon.com: Grave Words: Notifying Survivors about Sudden, Unexpected Deaths eBook: Kenneth V Iserson MD: Kindle [email]Store

K_Z you have done a excellent job educating us lay people on this thread. We have 3 docs in our family and one of them is a ob/gyn. Once in a while she has to tell a patient that their baby is dead, then deliver the baby then if developed enough let the family spend time with the baby. Talk about emotional and stress. The docs feel the patients pain and understand the fear and anger the family have but they have to go to the next case and help the next live person.

I understand how this family feels, we lost a child 13yrs ago. I would never put my child through this nor put him on display asking for public donations. Without the full story I find it distasteful. Jmoo

Ciao

 

[Donjeta]

I think that it's a normal reaction for parents to feel guilty after the death of a child, even if there was no way for them to have foreseen it and nothing that they could have done to differently to prevent it. But prolonging the wait isn't going to undo any of this.

I just hope that if no institution materializes at the last minute and Jahi is disconnected from the ventilator today, the coroner's findings can some day help her come to peace and see that Jahi wasn't killed today, she had already gone and couldn't have come back.

 

[Sonya610]

But why does Jahi's mom feel so guilty? I can understand a small measure of guilt. We all wonder how we could have done something different when a loved one dies. But her guilt and denial are just off the charts.

Please understand, I am not being judgmental, I just think she must have a lot of other issues as well that must tie into this and I hope she can get the help to be able to cope with this and not completely lose it over Jahi's death. She has 3 other kids who need their mother, and stability more than ever.

I don't think it is all about guilt. The word "injustice" has been used by the family and their lawyer MANY times. I think there is also the attitude that they are owed as much as they ask for with regard to procedures and pointless treatments. To deny them is to victimize them etc... If I thought a doctor or hospital screwed up and caused the death of a loved one I would be using the word INCOMPETENCE not injustice! Huge difference between the two and the difference is significant.

If you read any of the studies on groups that historically resist having machines turned off the belief that others are "not willing to spend money and will screw over their loved ones" is a frequently mentioned concern. They want the machines to stay on in part to prove their loved one has value and that they themselves (the family) have value.

It is bigger than just accepting the death of a loved one, there are all sorts of other belief systems that come into play.

 

[CHERIE.T]

K_Z you have done a excellent job educating us lay people on this thread. We have 3 docs in our family and one of them is a ob/gyn. Once in a while she has to tell a patient that their baby is dead, then deliver the baby then if developed enough let the family spend time with the baby. Talk about emotional and stress. The docs feel the patients pain and understand the fear and anger the family have but they have to go to the next case and help the next live person.

I understand how this family feels, we lost a child 13yrs ago. I would never put my child through this nor put them on display asking for public donations. Without the full story I find it distasteful. Jmoo

Ciao

I b m
:therethere::hug:

 

[ellemo]

Oops. Didn't mean to post

 

[Leilei]

I wish that someone, anyone, would take the time to think about what Jahi would want right now. That is what keeps going through my mind, what would she want?

This is one of the saddest, most emotionally disturbing things I've ever followed

 

[CarolinaMoon]

http://www.mercurynews.com/breaking...t-divisive-battle-over-jahi-mcmath-is-mothers

Jahi's mom, speaking on the second opinion about getting the surgery. But she isn't clear on what the first opinion was.

"Everyone says it's not my fault," Winkfield said ......."But I drove her here. I made the appointment. I got the second opinion.

"It was me. It was all me," .......... "She didn't do it. She just followed what I said. So I feel like it would be so wrong of me to let them pull that plug on her."

Honestly, I don't get her reasoning that Jahi should be kept on life support to appease her guilt over consenting to the surgery. So she wants Jahi to remain on life support as her brain decomposes, having her diaper changed, cared for by strangers, being FORCED to breathe, not allowed to rest in peace?

Actually, it kinda freaks me out a bit, because in 2 other cases (of children being on life support with parents going to court to stop the hospital from removing life support), it was the parent who had caused that child's injuries that resulted in them being on life support.

Those parents had good reason to feel guilty and no doubt feared the murder charges they would face if the child went off life support.

But why does Jahi's mom feel so guilty? I can understand a small measure of guilt. We all wonder how we could have done something different when a loved one dies. But her guilt and denial are just off the charts.

Please understand, I am not being judgmental, I just think she must have a lot of other issues as well that must tie into this and I hope she can get the help to be able to cope with this and not completely lose it over Jahi's death. She has 3 other kids who need their mother, and stability more than ever.

BBM

Thank you for the link! I also don't know what the first doctor recommended, but based on what she did say, it sounds like the first could have been the "hard" route.

As it is, we will probably never know much of what happened prior to the decision to have the surgery done, but Jahi's problems must have been very serious for any doctor to recommend such drastic surgery based on the discussions and excellent information provided by all our WS'ers. Thank you all.

 

[K_Z]

I don't think it is all about guilt. The word "injustice" has been used by the family and their lawyer MANY times. I think there is also the attitude that they are owed as much as they ask for with regard to procedures and pointless treatments. To deny them is to victimize them etc... If I thought a doctor or hospital screwed up and caused the death of a loved one I would be using the word INCOMPETENCE not injustice! Huge difference between the two and the difference is significant.

If you read any of the studies on groups that historically resist having machines turned off the belief that others are "not willing to spend money and will screw over their loved ones" is a frequently mentioned concern. They want the machines to stay on in part to prove their loved one has value and that they themselves (the family) have value.

It is bigger than just accepting the death of a loved one, there are all sorts of other belief systems that come into play.

Excellent insight, Sonya610, and a great post.

I am also disturbed about the word "injustice" being used. I am even more disturbed about the saber-rattling threats of the family attorney, Dolan, that he intends to file civil rights injunctions.

This case, IMO, is not now, and never has been about civil rights. To imply that this child's or this family's rights have been abused is to say that this child and family is not receiving "something" that OTHER non, disadvantaged people WOULD be receiving. I just don't see it that way at all. This is about the determination of death, and the proper, timely, and legal withdrawal of mechanical ventilation/ life support measures. I don't see any other families being offered prolonged life support after 6-7 determinations of brain death.

I don't see where there is any imposed "injustice" for this child or family. In fact, I see this family as receiving far more support and consideration by the hospital and the courts than many, if not most families in similar circumstances receive.

As far as the mother feeling intense guilt, I can understand that. Guilt is an emotion that is not always logical or rational. Love is also not always logical or rational, and love and guilt and grief all balled up into one excruciating mass of emotions can compel people to do all sorts of things.

What I really don't understand is why the family's religious, and other supporters feel that the only way they can express compassion and support is by buying into the family's very altered view of what is going on, and how to best proceed. I said it before-- it's a voluntary "folie a deux" for all of them.

 

[J1981]

I just love this board. I usually only follow the missing persons/located persons threads but after searching articles on the internet about Jahi and longing for real discussion, I came here and got exactly what I wanted- excellent info, comments, and insight. Thank you!

I'm not on the blame-the-hospital side of the fence BUT I do wonder why they didn't rush her back to the OR for cauterization once she started bleeding so heavily. From previous posts on here it seems that is fairly common after these surgeries.

Also, a couple years ago my then 6 y/o had to have elbow surgery after a messy break. He needed pins inserted under anesthesia. The doctor said "this is an EASY procedure- it's NOTHING to worry about". Well, yes, it was easy for our doctor- but not us as parents! My little guy had a horrible time coming out of the anesthesia (he's an anxious kid anyway) and it was a really hard few days for us. Point being- sometimes doctors say a procedure is simple because it's simple TO THEM (which is good!) but it's still more than the family may have realized.

I do hope that Jahi can finally rest in peace this evening and be buried with honor. My heart hurts for this case because I guess I can relate to the feeling that "oh I won't be the 0.0001% that gets complications from X". That being said, this circus is not acceptable and they need to let her go or bring her home at their expense. IMO.

Thanks for all the insight as to what may have gone wrong. I too was struggling with "but WTH happened?!?"

Xo

 

[MissJ]

Just for information purposes: I am a small person but I have terrible sleep apnea and stop breathing. As a result I have a short attention span and memory problems.. It is not about getting up eating. I stop breathing. I'm not up eating nor do I wet the bed. I do have to get up to void every hour or two. Still I will not have the surgery due to bleeding issues in my family. Its not about neurotic people who are up eating and peeing the bed. Its a very serious disorder.

 

[MissJ]

If her heart were beating on its own, there wouldn't even be a thread here.

Her heart is beating on its on. She is not breathing on her own. The two systems are independent of one another.

 

[Karmady]

Excellent insight, Sonya610, and a great post.

I am also disturbed about the word "injustice" being used. I am even more disturbed about the saber-rattling threats of the family attorney, Dolan, that he intends to file civil rights injunctions.

This case, IMO, is not now, and never has been about civil rights. To imply that this child's or this family's rights have been abused is to say that this child and family is not receiving "something" that OTHER non, disadvantaged people WOULD be receiving. I just don't see it that way at all. This is about the determination of death, and the proper, timely, and legal withdrawal of mechanical ventilation/ life support measures. I don't see any other families being offered prolonged life support after 6-7 determinations of brain death.

I don't see where there is any imposed "injustice" for this child or family. In fact, I see this family as receiving far more support and consideration by the hospital and the courts than many, if not most families in similar circumstances receive.

As far as the mother feeling intense guilt, I can understand that. Guilt is an emotion that is not always logical or rational. Love is also not always logical or rational, and love and guilt and grief all balled up into one excruciating mass of emotions can compel people to do all sorts of things.

What I really don't understand is why the family's religious, and other supporters feel that the only way they can express compassion and support is by buying into the family's very altered view of what is going on, and how to best proceed. I said it before-- it's a voluntary "folie a deux" for all of them.

Agree. There's definitely at least some of that going on. I read a statement from a pastor (I think the family member) who used a word like "value" or "worth" referring to Jahi's life -- the implication being that the hospital is treating Jahi's situation as "less than." I think at least some of the clergy involved are of the same mindset. jmo

 

[Elley Mae]

I just love this board. I usually only follow the missing persons/located persons threads but after searching articles on the internet about Jahi and longing for real discussion, I came here and got exactly what I wanted- excellent info, comments, and insight. Thank you!

I'm not on the blame-the-hospital side of the fence BUT I do wonder why they didn't rush her back to the OR for cauterization once she started bleeding so heavily. From previous posts on here it seems that is fairly common after these surgeries.

Also, a couple years ago my then 6 y/o had to have elbow surgery after a messy break. He needed pins inserted under anesthesia. The doctor said "this is an EASY procedure- it's NOTHING to worry about". Well, yes, it was easy for our doctor- but not us as parents! My little guy had a horrible time coming out of the anesthesia (he's an anxious kid anyway) and it was a really hard few days for us. Point being- sometimes doctors say a procedure is simple because it's simple TO THEM (which is good!) but it's still more than the family may have realized.

I do hope that Jahi can finally rest in peace this evening and be buried with honor. My heart hurts for this case because I guess I can relate to the feeling that "oh I won't be the 0.0001% that gets complications from X". That being said, this circus is not acceptable and they need to let her go or bring her home at their expense. IMO.

Thanks for all the insight as to what may have gone wrong. I too was struggling with "but WTH happened?!?"

Xo

I agree with all of this and have wondered the same.

I wondered if her going into cardiac arrest stopped them from going to surgery. I also think that it happened quickly, before anything could be done. jmo

I have always been more concerned about the Anesthesiologist then the surgeon. I have always been very nice to the person that sends to La La land and then brings me back.

bbm You know I have a feeling we may never know what happened. I'm thinking an out of court settlement, there by rendering both sides silent.

It's amazing the settlements that go unnoticed against hospitals.

 

[txsvicki]

I know some Orthodox Jews and a few other religions have fought against brain death diagnosis as dead, but I'd like to know what Jahi's pastor says about this.

 

[MyBelle]

Would the coroner's office even let them bring home a dead body, if they wanted to? In their view, is that a public health hazard -> dead body in a house, particularly with children?

Of course not. The Hospital has drawn a line in the sand and is insisting it must speak directly with the specialized facility before they will release her. That hard line has resulted in facilities backing out. The coroner must also agree to the transfer. There is simply no way at this point the hospital is going to allow the child to go home, imo.