13 Year old gir declared brain dead has now officially died

[Coonhound]

What I'm confused about is ...sorry to be so blunt, but she is already dead and has a death certificate with a time of death on it, and they must get permission from the coroner to move her because of rules about moving a corpse..I'm sorry it sounds so awful...but, with all that, why is there question over ending her life or worry over letting her die? I'm just confused by the terminology I guess because from what I understand- if understood correctly- isn't the child ALREADY dead? I felt awful typing that ..

 

[lauradis]

What I'm confused about is ...sorry to be so blunt, but she is already dead and has a death certificate with a time of death on it, and they must get permission from the coroner to move her because of rules about moving a corpse..I'm sorry it sounds so awful...but, with all that, why is there question over ending her life or worry over letting her die? I'm just confused by the terminology I guess because from what I understand- if understood correctly- isn't the child ALREADY dead? I felt awful typing that ..

Don't feel awful. Yes by current medical rules she is dead. Her parents don't want to except this and are fighting the discussion and want her moved to long term care place. Where they believe she will get better care and recover. Sound like classic denial. Who would want to face this reality.

 

[Friend of a Mouse]

Well, I imagine they are in shock at the moment. Having your loved one go in for minor surgery and then end up in this situation was not on the agenda.

Can the family ask for an autopsy in order to reveal any abnormalities with the surgical procedure or the girl itself? That would be where my interest would be as a parent.

Truly a heart breaking thing.

The family is alleging malpractice. The medical examiner has already stated that the longer they wait, the less likely the autopsy will be able to determine what happened and whether it was a complication or malpractice. In a case like this, the hospital has to look at all the angles and this will prevent them from knowing where changes can be made. By what they were saying, it may already be too late. This will also have an effect on any type of case they bring against the hospital.

For those who asked how a routine tonsillectomy could have resulted in so much bleeding and why the girl was in the ICU, this surgery was much more involved. The girl suffered from sleep apnea due to enlarged tonsils and extra tissue in her nose and throat. Besides removing her tonsils, they removed quite a bit of extra tissue that was blocking her from breathing properly at night. This left a much larger operative site that had more potential for bleeding. She did wake up after the surgery and was eating a popsicle when the she started bleeding from her nose and mouth. Her mom and grandma called the nurse, who said it was normal post-operative bleeding. The nurse gave them cups to catch the blood and pretty much left them on their own. When it didn't stop, they called the nurse over and that's when it became clear that she had lost too much blood and she was going into cardiac arrest. It's hard to fathom how a girl could be allowed to bleed to death in the ICU where she is supposed to be constantly monitored by staff, not just family.

That is what the family is saying. I cannot see the nurse bringing in a cup to catch the blood and let it be. Obviously due to HIPPA the hospital cannot defend themselves. It might be possible that at first it was a small amount of blood and that was described as normal. Then perhaps it got to be more and they were trying to get it under control. The point is, we don't know and will probably never know as the family has not authorized the hospital to talk.

This is what scares me the most. Since brain death is totally different from being in a vegetative state, I find it frightening that the original judge who issued an injunction stopping the hospital from removing the vent has set a new precedent regarding who can define "death".
I think we, as a society, are going down a dangerous path because we DO have the technology to sustain a deceased person in a way that the body stays warm and we feel like life is still there. I don't know the answer, but it does frighten me because it feels like we are starting to play with nature or god, which ever way you believe. So, so sad...

The child is legally dead. That has been made clear. The concern appeared to be (From the family) that the hospital may have declared death to cover up their own negligence so an independent doctor certified it, more than one. So no, the courts are not saying doctors cannot declare death. The girl is already dead as death is defined either by cessation of the circulatory system or cessation of all brain activity including the brain stem which is the case with this girl. All the court did was say the family had until the 30th to say goodbye.

I feel for this family and cannot imagine the guilt and agony they feel. I do not want this sound callous, but I truly wonder where the expect the resources to come from? It is thousands of dollars a day to keep a person in an ICU on life support. She is taking a room and resources that may be needed by somebody else. Because the child is truly dead, I doubt their insurance really will pay for it. I would love for money to not be a factor, but it is. If we kept alive every brain dead person indefinitely because their families could not handle it, we would quickly run out of resources. I am also concerned about that issue with the Texas case. I hope that the state is footing the bill and the family is not asked to pay a penny since this care is against their wishes.

 

[Tozzie]

I have read a few stories on this as it pops up as the lead article on many sites, I do have a question. The family attorney keeps stating he will file a federal lawsuit if the hospital refuses to put the breathing and feeding tube in, can a hospital or doctor be forced to perform those procedures?

 

[DisneyJamieCA]

I have read a few stories on this as it pops up as the lead article on many sites, I do have a question. The family attorney keeps stating he will file a federal lawsuit if the hospital refuses to put the breathing and feeding tube in, can a hospital or doctor be forced to perform those procedures?

To the best of my knowledge, no they can't be forced to perform them.

 

[minniecarousel]

The family is now fund-raising for her care.

 

[MSLRAC]

The family is now fund-raising for her care.

That's so sad! I know that they don't want to give up on her but she's gone and no amount of money can bring her back. They are looking at a lifetime of financial hardship if they try to keep her alive. I truly feel so sorry for them!

 

[Tinijocaro]

As far as them being bad for making their daughter "live" in a vegetative state-she's not alive, her brain is dead, her cells and organs are alive. big difference. She is not suffering. She cannot feel pain, boredom, or loneliness because her brain is dead.

As a parent, if my child were still warm, looking very similar to what they looked like in life, I would have a hard time accepting that she was dead (brain dead). I would want to hang on to any shred of hope, even when all others are telling you that there is no hope.

I think they just need time to accept it. I will not judge them-this has to be killing them. None of us knows what this must feel like.

 

[Pea-n-Me]

I spent some time last night sorting through some of the articles out there about this case going back to when it first happened. Without seeing hospital records it is impossible to know exact circumstances that occurred to cause such a devastating anoxic brain injury while in the hospital. It does sound like it was more than a routine tonsillectomy; that there were other areas in her head and throat that were operated in due to her having sleep apnea. Many of these areas are very close to the brain. (As I've said in other threads on this type of surgery.) If bleeding internally (inside her head), there may not have been an easy way to stop it. In these cases, we only hear one perspective, since hospitals cannot release information or even comment, really. We'll have to wait until more information is known - which may be never if there are constraints placed on information, etc. (The hospital has asked the family to allow them to release pertinent details of the case to the public, but apparently this hasn't happened. It is noted in most early news articles, though. It could help allay fears for others having surgery, etc.)

The family also made it clear in their statements that they want people to know they are not being ignorant or unrealistic. They are aware of the facts or her prognosis, but they are hoping for a miracle; they want to give it more time. Naturally they are also more than a little distrustful of what they are being told. After all, Mom told her daughter "everything would be ok" (as she believed in her heart - and rightfully so - that it would be) after daughter (according to one article) expressed fears she "wouldn't wake up after surgery. Mom is now dealing with the guilt of that.

One article (which I don't think I'll have time to link this morning, but may be able to find it again later) mentioned that this may be (paraphrasing) cultural/religious based. This was my thought as well as I have seen it happen before in real life. People believe in miracles and have heard of them happening before, so they hold out strong hope it may happen for them, too. It is hard to describe what it is like caring for a person in this condition. Very emotional. Gut wrenching, actually. As caregivers we try hard to give realistic information, yet be non-judgemental about decisions that are made, with efforts toward honoring familes' wishes.

It will be interesting to see what happens tomorrow, with the deadline of 5pm.

At any rate, I feel horrible for this family and am keeping them in my prayers.

 

[hereyago]

Her mom has almost raised 15 of the 20,000 dollars on gofundme. She wrote on it that the place that had said the dd can go to and be airlifted(hence the 20,000) has backed out but she is still looking.


I do have to say aside from the denial aspect, she has done what you are supposed to do for a loved one, in advocating for them when they can't speak for themselves as well as get more then 1 opinion.

Perhaps I misunderstood, but tomorrow's deadline is for her to appeal the judge's decision and get her someplace else, if not then she is taken off the support, or did I just totally misunderstand? TIA

Another question if anyone knows, say they finally come to terms and say we want to donate her organs. Would it be too late for that?

 

[CF'er]

The 5PM deadline was what the court gave the family to either find alternate care, appeal (I think) or the hospital has the right to remove life support. Will they? Who knows. If the family is working on getting her transferred probably not.

I believe the longer she is kept on life support the less viable the organs are. However, I assume there will be multiple autopsies and I don't know what can be taken after that. I am fairly certain that heart, liver, kidneys etc won't be able to be harvested as they are generally taken with the person still on support. Skin and bones probably.
I wish them peace.

 

[DisneyJamieCA]

The 5PM deadline was what the court gave the family to either find alternate care, appeal (I think) or the hospital has the right to remove life support. Will they? Who knows. If the family is working on getting her transferred probably not. I believe the longer she is kept on life support the less viable the organs are. However, I assume there will be multiple autopsies and I don't know what can be taken after that. I am fairly certain that heart, liver, kidneys etc won't be able to be harvested as they are generally taken with the person still on support. Skin and bones probably. I wish them peace.

That's hard to say. If there was a place ready to take, I agree they probably wouldn't take her off life support, but from what the PP said, the place that was going to take her has backed out. And she still hasn't the surgeries, nor will she where she is, needed to make the transfer. I don't think the hospital will keep her on life support indefinitely until they find some place. Sad situation all around.

 

[nursebetty]

Being an OR nurse I have seen bleeding tonsils come back. They do bleed and it is a life threatening event. Parents are instructed that if they see blood (bright red) bring them back to the hospital (if they have left the hospital) I do believe this is a malpractice case. This child should have been back in surgery. Blood was probably going down her throat also. Her blood pressure should have been dropping. Sadly the signs were missed.

 

[kacaju]

Let me ask...if she is already dead...what is the harm of honoring the parents wishes to do the surgeries (which..that alone..I don't think I could do, since the trach would be going right into her neck where this all started!!) and move to her? The parents feel enough guilt over this...what is so wrong about carrying out their final wishes for their daughter? What harm will it do?
I understand she is gone and nothing will bring her back. Just wondering why

 

[JanaDee]

Let me ask...if she is already dead...what is the harm of honoring the parents wishes to do the surgeries (which..that alone..I don't think I could do, since the trach would be going right into her neck where this all started!!) and move to her? The parents feel enough guilt over this...what is so wrong about carrying out their final wishes for their daughter? What harm will it do?
I understand she is gone and nothing will bring her back. Just wondering why

Because someone has to absorb the cost for her very expensive care and it won't be the parents.

 

[DisneyJamieCA]

Let me ask...if she is already dead...what is the harm of honoring the parents wishes to do the surgeries (which..that alone..I don't think I could do, since the trach would be going right into her neck where this all started!!) and move to her? The parents feel enough guilt over this...what is so wrong about carrying out their final wishes for their daughter? What harm will it do? I understand she is gone and nothing will bring her back. Just wondering why

Without sounding crass and uncaring, because I do feel for the parents, it's because it would cost a lot of money and resources for something that is unnecessary. And despite what the parents have said, I really don't believe insurance will pay for it, or her long term care. So who is left to pay for it?

I know they are fundraising and the PP said they had raised $15 of the 20K needed for the airlift, however I know when my daughter was airlifted the bills (just for the life flight) came in over $300K (thankfully we had insurance), so I'm not sure if their numbers are even accurate.

 

[Pea-n-Me]

No doubt the local organ bank is already involved. A representative comes to the hospital to review the situation and see if organ harvest is a viable option. They approach the family with sensitivity, but in cases like this, the possibility of organ donation is probably something they are not ready to hear or consider. Approach may even heighten distrust in this case. Unfortunate, because they may lose the opportunity to allow their daughter to live on in someone else. At any rate, whether organs like the heart and kidneys are viable after cardiac arrest will have to be evaluated. It may not be a possibility due to anoxia or injury during resuscitation, etc. But something like skin may be, and will probably continue to be even if she is kept alive artificially.

 

[hereyago]

Let me ask...if she is already dead...what is the harm of honoring the parents wishes to do the surgeries (which..that alone..I don't think I could do, since the trach would be going right into her neck where this all started!!) and move to her? The parents feel enough guilt over this...what is so wrong about carrying out their final wishes for their daughter? What harm will it do?
I understand she is gone and nothing will bring her back. Just wondering why

Because those aren't the final wishes, they are not believing she is truly dead. Not to mention it's unethical to work on a corpse unless it is for scientific learning(my df gave his body to science, no problem with it at all and even then not even the body farm would be allowed to use her body as a minor I don't think)

While I commend them for advocating for her and seeking a second opinion, the hospital I believe held up it's end on the patient's rights aspect. They have been trying to give her respect and dignity. A second opinion was done.

Not to mention, the costs.

 

[dakcp2001]

If they had private insurance I don't believe the case would have gotten even this far. This leads me to believe thet don't. This kind of care costs millions of dollars and someone has to pay for it. And this hospital clearly states they don't feel it is ethical do perform surgery on a dead person. As health care practioners you have to do what is in the best interest of your patient. this request to prolong artificial life, well, It's a huge waste of resources and would set a precedent that no hospital would be willing to set. Not to mention liability. They already know a large lawsuit is coming. Anyone who performs any procedure now will be named in it. Most docs and facilities are not going to touch that with a ten foot pole. I would be surprised if any long term care facility would accept her.

Try calling your insurance company and asking them to pay for a procedure you don't need, and no doctor thinks you should have. Then tell them your mom really wants you to have it. See how that goes.

 

[Pea-n-Me]

Let me ask...if she is already dead...what is the harm of honoring the parents wishes to do the surgeries (which..that alone..I don't think I could do, since the trach would be going right into her neck where this all started!!) and move to her? The parents feel enough guilt over this...what is so wrong about carrying out their final wishes for their daughter? What harm will it do?
I understand she is gone and nothing will bring her back. Just wondering why

I think the question is, to what end? It is not a "therapeutic" move because technically, she is already dead.

The family, if not now, at some point, will have to examine what they wish to get out of this. Will they want to just keep her body alive? ("Warm", as the mother says?) Practically, this is what they're requesting. And she could languish for years that way.

Additionally, what happens if, say, they place a trach or feeding tube and those surgical sites bleed (or otherwise have complications) when she's at the nursing home. How will they handle that? Will they call 911? What will be her "code status"? Full resuscitation? (Of a dead person?) If they fail to act quickly, what will their liability be? If she "dies" there - wait, can she die there if she's already been declared dead?

Really, it doesn't make a lot of sense. Even without looking at costs.

Lots of medical-legal-ethical questions here.