13 Year old gir declared brain dead has now officially died

[Callie]

Maybe the mom is saying they aren't feeding her to pressure them into giving her a feeding tube?

I assume she is getting some nutrients and fluids needed to survive via the IV.
I wonder if she is being giving baths?

Such a sad situation.

 

[bcla]

I drove past Children's Oakland today. Saw a camera on a tripod set up in front and I think it was the family in front of it.

Plain and simple, this is now a freakshow, and this girl's body is the prop. And it shouldn't be. Reason and rational thought has gone through the window and they seem to be using the media and the court system to demonstrate how strong their faith is.

 

[AKpooh]

this topic has been the main source of arguments on every board I go to. first off enlarged tonsils don't mean sleep apnea in all of the cases. in the case of my niece it was allergies. her body used her tonsils as a way to deal with what was going on in her body from her allergies. she has had them removed but her body also started new issues dealing from her allergies such as blisters.

I feel bad for this family but in my opinion we haven't heard the whole story. many are blaming the hospital and doctors for her death. in all surgeries there is a risk and in this case it ended up in a death. do I believe she is gone...yes I do. do I think they are wasting services that could be used else where yes. so much good could have come out of this but no matter how much you believe or how religious one is nothing can make a brain magically grown and be well again. JMO

 

[DisneyJamieCA]

I drove past Children's Oakland today. Saw a camera on a tripod set up in front and I think it was the family in front of it. Plain and simple, this is now a freakshow, and this girl's body is the prop. And it shouldn't be. Reason and rational thought has gone through the window and they seem to be using the media and the court system to demonstrate how strong their faith is.

It may have the hospital spokesperson. Or maybe the family spoke before/after? http://www.ktvu.com/news/news/local/mcmaths-family-struggles-get-surgeries-teen/ncZhP/ I didn't realize the judge had ordered the no surgeries may be performed on her. Doesn't this make this whole thing moot then? If the judge ordered she can't have the surgeries to get the trach & feeding tube, and she needs those to be transferred, what is the point of working on the transfer? Or once they get the transfer set up, the judge may then allow the surgeries? And the uncle did say today, she is not/was not an organ donor.

ETA: This is a more complete article from another station who does say the family came out to talk today, so you were right. http://abclocal.go.com/kgo/story?section=news/local/east_bay&id=9378569

(and this article says that New Beginnings place in NY has ties the Shiavo Center started by Terri's family.

 

[Pea-n-Me]

I didn't realize the judge had ordered the no surgeries may be performed on her. Doesn't this make this whole thing moot then? If the judge ordered she can't have the surgeries to get the trach & feeding tube, and she needs those to be transferred, what is the point of working on the transfer? Or once they get the transfer set up, the judge may then allow the surgeries? And the uncle did say today, she is not/was not an organ donor.

http://abclocal.go.com/kgo/story?section=news/local/east_bay&id=9378569

I hadn't seen that, either. It does seem like a major wrinkle in their plans, then, if it's true.

On that page, too, there was an interesting link to an article called Top Ten Sexiest CPAP People. If you haven't seen a CPAP appliance before, this is what it looks like. (Relevant, I think, since I'd mentioned I think it would be difficult for a 13 year old girl to want to wear.)

http://www.easybreathe.com/blog/cpap-study-can-cpap-therapy-save-marriage/

 

[sonnyjane]

It may have the hospital spokesperson. Or maybe the family spoke before/after? http://www.ktvu.com/news/news/local/mcmaths-family-struggles-get-surgeries-teen/ncZhP/ I didn't realize the judge had ordered the no surgeries may be performed on her. Doesn't this make this whole thing moot then? If the judge ordered she can't have the surgeries to get the trach & feeding tube, and she needs those to be transferred, what is the point of working on the transfer? Or once they get the transfer set up, the judge may then allow the surgeries? And the uncle did say today, she is not/was not an organ donor. ETA: This is a more complete article from another station who does say the family came out to talk today, so you were right. http://abclocal.go.com/kgo/story?section=news/local/east_bay&id=9378569 (and this article says that New Beginnings place in NY has ties the Shiavo Center started by Terri's family.

I didn't see that the judge ordered that no surgeries be done. I read that the judge did NOT order that the feeding tube be inserted, but that's different than ordering it not be inserted.

 

[DisneyJamieCA]

I didn't see that the judge ordered that no surgeries be done. I read that the judge did NOT order that the feeding tube be inserted, but that's different than ordering it not be inserted.

"A judge has ruled no surgeries can be performed on the 13-year-old."

That is in the KTVU article.

Although I believe the KGO one says that the family says there is a place that will take her on the vent. I don't know if that is a misquote or if they mean it.

 

[Lorelei Lee]

"A judge has ruled no surgeries can be performed on the 13-year-old."

That is in the KTVU article.

Although I believe the KGO one says that the family says there is a place that will take her on the vent. I don't know if that is a misquote or if they mean it.

I want to see the judge's order. I don't think the court affirmatively forbade surgeries. More likely the court denied a request to order the hospital to perform the surgeries.

 

[DisneyJamieCA]

I want to see the judge's order. I don't think the court affirmatively forbade surgeries. More likely the court denied a request to order the hospital to perform the surgeries.

That's what I understood leading up to reading the article. I was only passing on what the article said. Obviously I'm not in a position to prove it's truth.

 

[CF'er]

The only place that can take her without the vent is the morgue. I think they mean with the tube inserted as it rather than having the trach put in?

 

[DisneyJamieCA]

The only place that can take her without the vent is the morgue. I think they mean with the tube inserted as it rather than having the trach put in?

I don't know if this is reference to something I posted, but I didn't say anything about any place taking her without a vent. I said according to one of the articles, the family says they have found a place that will take her with the vent (meaning they wouldn't place the trach)

 

[sookie]

I don't know if this is reference to something I posted, but I didn't say anything about any place taking her without a vent. I said according to one of the articles, the family says they have found a place that will take her with the vent (meaning they wouldn't place the trach)

Let's just entertain the idea that she will be able to leave the hospital in her current state.

She will require long term vent care; therefore a trach is needed. She has failed her apnea test (part of what determines brain death) and does not breathe on her own. She will require a ventilator, even with a trach placed, if her body is to be moved to another facility. The trach is a more stable airway.

 

[Disney Doll]

Here's an ideal that I've been contemplating in light of comments like Jana's above. I'm NOT advocating it, just putting it out there for review and I realize my comments are addressing a hypothetical using Jahi's case as a catalyst, not as a direct example:

If we agree that brain-dead is dead, and that dead means all sentience has ceased in this temporal plane, then it would follow that we also believe that
a) the transcendent part of the person (if we believe there is one) has entered into whatever eternal state comes next and is beyond the reach of any intervention (not intended to open debate about those options here) and;
b) the body is beyond physical suffering as the mechanisms necessary to register any such conditions are completely absent.

Supposing this, what then is the difference between the present state of this body and one that's been donated to research? How is the indignity any greater than being chemically preserved, dissected, poked, prodded and observed for months or years on end in the interest of advancing medical science? Other than our visceral reaction to the concept is there truly a material difference?

Again, I realize the case at hand does not fit the scenario I've proposed, but all cadavers were once as Jahi was - living and loved, and now are no longer.

People who donate their bodies to science make that decision themselves with full knowledge of what it entails.

 

[Disney Doll]

My heart breaks for this family. I cannot even fathom the level of grief that they are going through. I pray for them.
That being said- I think there are people on this thread who simply think that they should pull the plug and that's it and move on. That's okay if that is what you want and agree to. I will say that I personally would not want to be taken off life support. I have been very clear to my family about it. Some may call it selfish but I do believe in miracles and how does anyone really know if the ill person knows what is going on? Just because someone went to school doesn't mean they know it all. We have all seen cases where "miracles" occur. These things aren't black and white. This is my opinion and it's okay if this isn't for you. I respect that your (general you of course) choices might be different. I just think that in the end, especially in a situation like this, the family should make the decisions. I support their choice. JMHO. YMMV.

And if whatever higher being you believe in us going to give you a miracle, won't He or She do it, ventilator or not?

Because really, in light of the family's thinking that there will be a miracle or that God will work wonders, He doesn't need a ventilator to do so.

One could argue that their actions actually show a lack of faith in their God.

 

[Disney Doll]

That's a good question. Of course we are trying to plan for our future the best that we can and while I personally want to be kept on life support if God forbid the need arose I also would not want to be a burden to my family. However, I think I kind of view it the same way that people who go through severe illness do. It sounds flippant but I think you just figure it out. There are tons of people in these types of facilities. I doubt they are all independently funded so the money has to come from somewhere. I will be honest and say that I never really thought of the money aspect. I suppose that makes me sound like a dope and in some ways I agree but I am hopeful that we will never have to cross this path.

Being kept on life support for an extended time period and not being a burden to your family are
mutually exclusive. That kind of extended medical care of a loved one IS a burden...financially, emotionally and in every other way imaginable.

The rest of us thank you for not worrying about the money. That means we will be paying.

 

[kacaju]

i just had a tonsillectomy in november. After repeat bouts of tonsillitis. I am in my late 20's, it was the worse recovery ever. I would never recommend this surgery to anyone. I had such bad vomiting that i ended up back in the er with dehydration. Then i did start bleeding. Fairly large amounts. It would clot and start again. I ended up in the er again but thankfully the bleeding stopped on its own after a few hours. Otherwise i would have had to go back into surgery and have my surgical site recauterized.
Before the surgery i was dreading having it done but in october i was so sick with tonsillitis that i was hospitalized for a week and nearly septic. I was better for a week and then it came back. So i had it done. I knew the recovery would be bad but never imagined it would be that bad.

I feel for this little girl. When i was bleeding it was so scary. I can only imagine what she was thinking or feeling. This situation is so sad and i will now think long and hard about my daughter ever having this surgery if the need comes up.

((hugs))

 

[Disney Doll]

This is clearly a subject that many feel very passionately about. I would expect that passion from the parties involved and from grieving parents. But I am a little taken aback by what I perceive as callousness and outright vitirol against the family in this case. I feel like the next thing I'm going to see are pitchforks and torches assembling outside the hospital. Wow.

Nevertheless, everyone and anyone is obviously entitled to their own feelings.

My question for those who feel clear passion about this little girl and their belief that she should be allowed to die or let go or allowed to rest in peace, etc:

Why does it matter, really? If you believe she is dead and gone then she is not suffering any longer. She is not there. She is gone. What's going on with her body right now should therefore not affect her in any way whatsoever if one truly believes that she is dead.

Now I will say that it does not surprise me at all that a family is taking more than a mere couple of weeks to accept that their child has died. It will probably take more like a couple of years.

Now the argument about resources does carry weight, in my personal opinion. That money does indeed need to come from somewhere. So if a person feels strongly about staying on life support indefinitely then yes, they should be prepared to fund that decision.]


Don't know how my response ended up as part of the quote but here is my response:::

As a nurse I have seen what extended life support measures do. It isn't pretty. And even if it is just the child's body, I still think it's an indignity to her memory to do this to her body.

Resources are secondary although I do agree that taking up valuable PICU space that could be better used helping a child with a chance is a good point.

Their claims of "faith". Well, put your faith into practice and take the kid off the vent. If their God wants her to continue to breathe, she'll continue to breathe, vent or no vent. What they're doing is actually showing a lack of faith in their God.

Their thoughts of sending their brain-dead child on a ventilator to a facility that is run by a former hairdresser. Really?? I'll say no more about that. It is ludicrous enough without additional comment.

I am starting to agree with those who think this is becoming a money making venture.

 

[Disney Doll]

While I do agree with you both that I would not want to burden anyone. Taxpayers, family etc. BUT- what about all the people who are currently "taxing" the healthcare system because of their poor life choices? What about the alcoholic who ruined their liver and kidneys? Should we not pay for dialysis? Or what about weight loss surgery and the follow up surgeries? Should we pay for those people's choices? In both scenarios those people will both die without treatment. Now before anyone starts flaming I just picked those 2 dx of the top of my head. There are tons of others. Those "illnesses" cost money also. Who gets to decide who is worth "saving?" Now I get the whole brain dead argument but in either scenario the person will die. Of course being brain dead isn't a hugely hopeful dx but either way the outcome will be the same. I don't know what the answer is but how do we decide who gets to live and who doesn't?

People who are on dialysis are alive, not brain dead. People who receive weight loss surgery are alive, not brain dead.

This child has had more than one medical professional, including some hired by the family, declare that she is brain dead.

 

[Disney Doll]

I am probably going to get torched for saying this, but it's just my opinion and random thoughts. I think there are two different situations going on with Jahi's family:

1) As many have shared, I think Jahi's mother is being driven by feelings of denial and guilt (who can blame her, it is her child) to keep Jahi on death support and is praying for a resurrection (miracle) but medically that just is not going to happen. She cannot see through her feelings of denial and guilt to let Jahi go. This is where someone professional needs to step in and help her cope through these very dark days. She has been quoted recently expessing concerns that her daughter is not being fed, is starving, glad she is a "thick girl", and tells her daughter that she is losing weight, but still "looks good". Jahi's mother needs help.

2) I think the Uncle is fueling this media circus, along with the help of the opportunistic lawyer, and is being driven by $$$$$$$. Yes, I do think the Uncle is devastated to have lost his Niece, but at this point - he appears (based on FB posts, Twitter posts, IG posts, etc....) to have moved past the devastation. The longer Jahi is kept on death support, the longer the charade goes on. Which is just sad to not let Jahi rest in peace, and to be using her like this.

Separate from the Family, I also feel that this New Beginnings is using Jahi's story to gain financial backing and awareness of their facility. Based on the comment upthread about any negative posts on their site will be deleted and people would be banned for posting negative comments. That just screams being opportunistic to me.

Just my opinion, and a sad tragedy no matter how you look at it.

With regard to #1- I am quite certain that Jahis mother has received all kinds of help, or at least offers of all kinds of help. There are teams of people in hospitals to assist families in these situations. It's not like we say "oh your kid us brain dead we're shutting off the vent now". There are social workers, grief counselors, clergy people, palliative care people etc. who would be involved here. But none of them can make the family listen.

With regard to #2-I agree

 

[Disney Doll]

So yes, I can see how routine surgery that we encourage 3 year old children to have can go crazy wrong. I don't think it had anything to do with the weight but complete mismanagement of the medical care she received.

How do you know her medical care was mismanaged? Based on what her family described? Her family that has proven to be unrealistic and is fundraising to put her into a facility run by a hairdresser? I'm not sure I would consider them the best sources if what was or was not appropriate medical management.

Until the medical records are reviewed by the medical/legal experts that will most certainly review them for the lawsuit that will most certainly follow, I'm not sure we can make any judgement on the medical care she received.