13 Year old gir declared brain dead has now officially died

[15isto2]

If you have large tonsils and/or adenoids, losing weight will not help the problem.

Obesity increases the risk of paediatric obstructive sleep apneoa by 5 times according to the sites I have looked at

 

[LisaR]

I would not do the surgery if my child was obese. I would help my child get healthy first.

While I don't disagree with you, why did a doctor suggest surgery to begin with? Shouldn't the doctor have told the family that he would not be willing to perform the surgery until her weight was under control? Since he obviously didn't insist on weight loss first, I'm going with the assumption that the doctor didn't feel she was at any bigger risk than any other 13 y/o who has this routine surgery.

 

[MinnieLovesMickey12]

I have told my husband AND children that if anything like this ever happens to me I would like them to wait about a week to make sure I am not going to wake up but if more than one doctor tells them I am not going to wake up or I will be in a vegetative state that I DO NOT want to be kept on life support. I do not want a vent or a feeding tube.

I also would do the same for my husband or children. I would wait about a week and have more than one doctor verify the findings but I would donate their organs and not leave them on life support.

One of my children's skating rink friends died in a car accident about 2 months ago but they immediately put him on life support to see if he would come around and wake up. The family was informed he was brain dead and they started making arrangements to donate his organs.

If you leave them on life support for a few days that gives the transplant organization time to find good matches for the organs. That is why they left him on life support for about 8 days.

Her other younger son was also in the same car accident and was hurt very badly. His legs were crushed and he broke a bunch of bones and was cut up very badly. He was still so bad that he was not able to attend his older brother's funeral.

But the mom of the boys did say in a Facebook post that it brought her immense comfort to know that her son did not die in vain and that through organ donation she was going to be able to basically save the lives of 4 or 5 other children.

I have talked to my children and they have all told me they want to be an organ donor if this ever happened to them. I also would like to donate too if my organs are viable and not eat up with cancer or anything like that.

I cannot imagine the extreme pain and grief this family must be feeling but they are so blinded by denial that they are not accepting that she is not coming back. They teamed up with a quack doctor that is just feeding into their delusions.

I am curious with this 32k dollars they have raised so far that they plan on using to move her body to a different facility, if she does get taken off life support will they pay her hospital bill with that money or keep it and use it to bury her? There is nobody who dictates what that money is for probably so who knows what they will do with it.

I am more sickened by the judge who keeps kicking this can down the road. He has to know that 5 different doctors have all determined that she will never wake up, so why bother giving them 8 more days to find a place. NO PLACE is going to take her.

This ridiculous house/facility that they claim is going to take her is run by a hair dresser and is not even meant for residential inpatient care. It is suppose to be an outpatient treatment facility.

Also I do not think they will find a doctor willing to put in a trach or a feeding tube.

 

[Pea-n-Me]

Sleep apnea can actually cause obesity. Poor quality sleep causes a rise in certain hormones that have a negative affect on the body, including promoting weight gain. So although I would absolutely work towards helping my child lose weight, I wouldn't necessarily postpone the surgery waiting for weight loss because a) the sleep apnea itself is part of the problem to begin with and b) lots of negative things can be happening in the body in the interim.

Sleep apnea puts a huge strain on the heart and lungs, and can cause pulmonary hypertension, which is NOT something you want your child to develop. It also causes a lot of other health and behavioral issues, many of which Jahi suffered from, according to some of the information about the case.

http://www.sleepfoundation.org/article/hot-topics/could-my-child-have-sleep-apnea

http://www.sleepapnea.org/treat/childrens-sleep-apnea.html

http://www.medicalnewstoday.com/articles/258467.php

Perfect concluded, "Even though SDB (sleep disordered breathing) appears to decline into adolescence, taking a wait and see approach is risky and families and clinicians alike should identify potential treatments."

Sleep apnea is prevalent in approximately two percent of healthy children, according to the American Academy of Sleep Medicine. Sleep apnea in kids of this age is generally due to oversized tonsils and adenoids. Most of these children with sleep apnea also experience loud snoring.

Treatment choices include the removal of the adenoids or tonsils via surgery and the use of continuous positive airway pressure therapy (CPAP).

 

[John VN]

.......But in Jahi's case, she is not alive. And you know what? I truly believe that if she would get her Lazarus miracle like her mother is so desperately hoping for, then it wouldn't matter one little bit if her vent was shut down. If God is going to resurrect that child, he will do it no matter what.

My bolding.

What more need be said.

 

[gottaluvPluto]

While I don't disagree with you, why did a doctor suggest surgery to begin with? Shouldn't the doctor have told the family that he would not be willing to perform the surgery until her weight was under control? Since he obviously didn't insist on weight loss first, I'm going with the assumption that the doctor didn't feel she was at any bigger risk than any other 13 y/o who has this routine surgery.

I could also get a second opinion and the doctor could tell me to lose weight first and then have the surgery. I have had several second opinions and always came out of the doctors office with a different solution than the first.

Sleep apnea can actually cause obesity. Poor quality sleep causes a rise in certain hormones that have a negative affect on the body, including promoting weight gain. So although I would absolutely work towards helping my child lose weight, I wouldn't necessarily postpone the surgery waiting for weight loss because a) the sleep apnea itself is part of the problem to begin with and b) lots of negative things can be happening in the body in the interim.

Sleep apnea puts a huge strain on the heart and lungs, and can cause pulmonary hypertension, which is NOT something you want your child to develop. It also causes a lot of other health and behavioral issues, many of which Jahi suffered from, according to some of the information about the case.

http://www.sleepfoundation.org/article/hot-topics/could-my-child-have-sleep-apnea

http://www.sleepapnea.org/treat/childrens-sleep-apnea.html

http://www.medicalnewstoday.com/articles/258467.php

What about a crap machine for the child? This could help a child until he or she loses weight so he can have a safer surgery.

 

[CPT Tripss]

My bolding.

What more need be said.

Nothing that can be discussed here . . . but, a lot can be said.

 

[dbrn]

What most strikes me about this case is the amount of confusion and misunderstanding about the difference between brain death and coma. I've read the comments attached to some of the news articles about this case, and I'm stunned by the number of people who don't understand what brain death means, and believe that somehow a patient's brain can heal and recover from brain death. It really speaks to our unwillingness, as a society, to discuss this very uncomfortable subject. The need for us to be able to discuss these issues, as well as palliative care (not applicable in this case, but also pertinent to discuss) with physicians, without considering such discussions "death squads" or "cover ups" by doctors, is evident.

While I support an individual's right to make their own decisions about the care they'd like to receive, I do hope that the decision is an educated one, with careful consideration taken as to how that decision effects others - and ideally, the person should have made arrangements to pay for such a decision. Families may lose homes or have liens against their homes when unable to pay the rising costs of maintaining care at a price tag of thousands of dollars per day. There should be no expectation that hospitals or physicians will provide futile care on a charity basis - hospitals have limited charity dollars, and they need to direct those dollars where they can do the most good. It's also unrealistic to believe any insurance company or third party payor, including Medicaid, will continue to pay for medically unnecessary treatment. In addition to the emotional stressors of caring for a loved one with no hope of recovery in order to abide by that loved one's wishes, I can't imagine adding the financial stressors to their burden - just my opinion.

I'm amazed that there is at least one medical professional in the family. Just like I'm surprised by the number of people who believe there is a chance for brain healing, I'm surprised that a medical professional wouldn't have an understanding of the difference between brain death and coma. Then again, one shouldn't assume - perhaps that person has tried to explain the difference as well, and those attempts have been futile.

I can't believe the number of people who have jumped to the conclusion that the hospital and physician "must have" done something wrong because this was "just a tonsillectomy." No procedure is without risks. People have died from the simplest of surgeries, even wisdom tooth removal. The fact that this child experienced a complication does NOT mean the physician or the hospital staff did anything wrong - maybe they did, but there's simply no evidence available to suggest such a thing at this point. There are cases of individuals who undergo major surgeries, then subsequently pass during a seemingly minor procedure - no procedure should ever be dismissed as "routine." We all seem to expect our doctors to be miracle workers, and to be perfect. They're human, just like the rest of us. As many miracles as they seemingly manage, sometimes it's just not possible.

I hope that if nothing else, the dialogue this case generates will result in more education of laypersons regarding end of life care, advanced directives, and the like, including the costs (emotional, physical, financial, resource-use) of maintaining someone through artificial means who has no chance of any meaningful recovery. I hope some people take the initiative to discuss these types of issues with their family and their physicians.

My heart goes out to everyone involved in this case, especially her mother. I just can't imagine her heartbreak. Such a terribly sad situation.

 

[LiveYourLife]

At any rate, heartbreaking however it happened. I'm sure she must have been frightened. And her family (and staff involved) will relive those moments forever.

Thank you for your detailed reply, Pea. I agree with your last sentiment. The thought of what was running through Jahi's mind and being frightened just makes my heart hurt.

 

[LiveYourLife]

If there was anything that could be done for this little girl or any shred of hope of recovery, I think everybody here would understand the family exhausting every last possibility and cheering them on. However that isn't the case. She is not going to get better.

I agree with this!

 

[Pea-n-Me]

What about a crap machine for the child? This could help a child until he or she loses weight so he can have a safer surgery.

My understanding is that it's not really a fix. The underlying problem still exists, which often makes it hard to breathe using the machine, so people stop using it. I think it's also hard to think of a child being dependent on CPAP. How would that work for things like sleepovers, vacations, family visits, boyfriends, etc. I doubt a teen girl would want to drag that thing around or wear it in front of people..

 

[gottaluvPluto]

My understanding is that it's not really a fix. The underlying problem still exists, which often makes it hard to breathe using the machine, so people stop using it. I think it's also hard to think of a child being dependent on CPAP. How would that work for things like sleepovers, vacations, family visits, boyfriends, etc. I doubt a teen girl would want to drag that thing around or wear it in front of people..

I'm not talking about wearing a crap forever or years. A teen can suck it up and deal with the machine for a little while until they can get to a healthy weight for surgery.

My brother and uncle are on a crap machine and it helps them out a lot. Also, my brother took his crap machine on vacation with him. So I'm pretty sure the teen can also do that so she can have a "normal" life.

 

[bittybabygrower]

Once again, due to the hospital and Doctor's being prohibited from talking due to HIPAA, we have no idea what was suggested to this family prior to this surgery. She may have been asked to lose weight, she may have been offered a trach until she lost weight. This was not a simple T/A like the family wants us to believe. And I have seem parents do all kinds of things like feed kids things they shouldn't have or sneak them food post op because they feel bad for them.

I also find it hard to believe that the nurses did nothing while this girl was bleeding and only gave them a bucket. And if the family was suctioning her, who knows what damage they caused.

My heart goes out to the staff...I can't imagine having to go Into work everyday and face that media mess and the family. While you are doing your best to give the best care possible to that patient and to support the family, it is tearing you apart fr the inside.

 

[Pea-n-Me]

I'm not talking about wearing a crap forever or years. A teen can suck it up and deal with the machine for a little while until they can get to a healthy weight for surgery.

My brother and uncle are on a crap machine and it helps them out a lot. Also, my brother took his crap machine on vacation with him. So I'm pretty sure the teen can also do that so she can have a "normal" life.

Sure, it's a possibility. But a lot hinges on her actually wearing it. Having two teens myself, I don't know... And again, weight loss will be tough if sleep apnea is a cause. Months and years can easily go by, and meanwhile health and other problems still exist. Someone posted upthread Jahi was having urinary issues as one of her sequelae. I thought I read incontinence if my memory serves me right. That's not an easy problem for a teen to deal with. School issues, too, can lead to depression and that sort of thing. A lot was really stacked up against this young lady, and I really don't wonder why her mom would choose the surgery.

 

[lovemygoofy]

So this is going to sound dramatic and really TMI disgusting but here goes. I could have almost been that poor girl 10 years ago. I had my tonsils out at age 25. I guess as a fat girl, I had fat tonsils.

I wasn't having sleeping issues but severe constant sinus problems as well as keeping strep all the time. In addition to having my tonsils out, I was also having my nose worked on due to a deviated septum.

I did not want to have this surgery at all and just kept having horrible feelings about it but was constantly reassured that millions of people have this done and I can as well. I went to an outpatient surgery center and my first clue that this was not going to go well was the nurses not getting the IV to stay. I went into surgery with the IV finally sticking out of my shoulder and that was after attempts in my hands, arms and feet/ankles.

I woke up from surgery in the hospital with a breathing tube. Apparently I had quite the asthma attack and breathing problems from the nose surgery. I had small bit of blood still coming from nose and that was 10 hours later.

I went home 3 days later and fast forward to day 7 post surgery. I was home alone and stood up to go get something to drink and *pop pop pop* my stitches busted open right in my kitchen. I started gurgling blood just like in the scary movies when someone is dying. Luckily my neighbor was home and drove me to the hospital. In the 15 minutes it took to get to the hospital, I was coughing up big amounts of blood into a mixing bowl of all things. I had to pull clots out because I thought I was choking. (sorry about TMI) I was going back into surgery within the hour of my stitches popping and also had to have two units of blood while in surgery due to loss.

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.

 

[bcla]

What most strikes me about this case is the amount of confusion and misunderstanding about the difference between brain death and coma. I've read the comments attached to some of the news articles about this case, and I'm stunned by the number of people who don't understand what brain death means, and believe that somehow a patient's brain can heal and recover from brain death. It really speaks to our unwillingness, as a society, to discuss this very uncomfortable subject. The need for us to be able to discuss these issues, as well as palliative care (not applicable in this case, but also pertinent to discuss) with physicians, without considering such discussions "death squads" or "cover ups" by doctors, is evident.

While I support an individual's right to make their own decisions about the care they'd like to receive, I do hope that the decision is an educated one, with careful consideration taken as to how that decision effects others - and ideally, the person should have made arrangements to pay for such a decision. Families may lose homes or have liens against their homes when unable to pay the rising costs of maintaining care at a price tag of thousands of dollars per day. There should be no expectation that hospitals or physicians will provide futile care on a charity basis - hospitals have limited charity dollars, and they need to direct those dollars where they can do the most good. It's also unrealistic to believe any insurance company or third party payor, including Medicaid, will continue to pay for medically unnecessary treatment. In addition to the emotional stressors of caring for a loved one with no hope of recovery in order to abide by that loved one's wishes, I can't imagine adding the financial stressors to their burden - just my opinion.

I'm amazed that there is at least one medical professional in the family. Just like I'm surprised by the number of people who believe there is a chance for brain healing, I'm surprised that a medical professional wouldn't have an understanding of the difference between brain death and coma. Then again, one shouldn't assume - perhaps that person has tried to explain the difference as well, and those attempts have been futile.

I can't believe the number of people who have jumped to the conclusion that the hospital and physician "must have" done something wrong because this was "just a tonsillectomy." No procedure is without risks. People have died from the simplest of surgeries, even wisdom tooth removal. The fact that this child experienced a complication does NOT mean the physician or the hospital staff did anything wrong - maybe they did, but there's simply no evidence available to suggest such a thing at this point. There are cases of individuals who undergo major surgeries, then subsequently pass during a seemingly minor procedure - no procedure should ever be dismissed as "routine." We all seem to expect our doctors to be miracle workers, and to be perfect. They're human, just like the rest of us. As many miracles as they seemingly manage, sometimes it's just not possible.

I hope that if nothing else, the dialogue this case generates will result in more education of laypersons regarding end of life care, advanced directives, and the like, including the costs (emotional, physical, financial, resource-use) of maintaining someone through artificial means who has no chance of any meaningful recovery. I hope some people take the initiative to discuss these types of issues with their family and their physicians.

My heart goes out to everyone involved in this case, especially her mother. I just can't imagine her heartbreak. Such a terribly sad situation.

I don't think the family truly has any confusion about brain death. I think it's a ploy to buy time for what feel they deserve. One uncle said that given enough time that they feel that God will "put the spark back in her brain". So for them the medical and legal definitions of death don't really matter if God can resurrect her from death. They're probably thinking that they need to show their faith by buying time, which will grant them an audience before God to perform this miracle.

 

[susan1]

Once again, due to the hospital and Doctor's being prohibited from talking due to HIPAA, we have no idea what was suggested to this family prior to this surgery. She may have been asked to lose weight, she may have been offered a trach until she lost weight. This was not a simple T/A like the family wants us to believe. And I have seem parents do all kinds of things like feed kids things they shouldn't have or sneak them food post op because they feel bad for them. I also find it hard to believe that the nurses did nothing while this girl was bleeding and only gave them a bucket. And if the family was suctioning her, who knows what damage they caused.



My heart goes out to the staff...I can't imagine having to go Into work everyday and face that media mess and the family. While you are doing your best to give the best care possible to that patient and to support the family, it is tearing you apart fr the inside.

Never suction a tonsil bleed, you could remove a clot that was forming. I surely can't believe the staff let them do this. Certainly not a procedure for unqualified people. Having worked in an I.T.U. I agree it must be a nightmare.

 

[JanaDee]

A friend of mine had a child with the above and he was obese. The mother helped him lose weight before the surgery. The family ate healthy and worked out 3 times a week. The boy lost weight and then had the surgery.

My 32lb 3 year old had large tonsils/adenoids and weight had nothing to do with it.

 

[sunshinehighway]

I think if people weren't being compassionate, she would have already been taken off life support. Most people do understand, or at least empathize with, the difficulty involved here. Many, including myself, have had the actual experience of removing a loved one from life support. It is gut wrenching (I myself needed days, pastoral support, and several informational meetings as well as "family meetings" so that my family was on the same page, even though I had the ultimate responsibility as the health care proxy) and hard to convey the actual feelings involved in a discussion like this. I imagine it would be way worse, even, to be in a situation involving one's child (as my best friend was two years ago, after an accident in which brain death occurred). I think that most people really do get this.

Additionally, even though hospital personnel may sound somewhat cold at times, they are probably upset themselves, and have to balance their statements between empathy and reality. It is not easy for them to sit with a distraught family and have to tell them their child has died. (And yes, I have experienced that.) What the family doesn't see are staff crying in the back rooms as they release their emotions and imagine being in that situation themselves with their own children. And I have not doubt whatsoever, as I have been involved in this type of situation, too, that nurses are caring for Jahi's body with the utmost respect and compassion. It is in no way easy for them, either, as they are also parents, children, aunts, uncles, brothers, sisters, friends, etc., in their own lives, too. Patients and families often either don't consider, or don't realize, that we bring to the bedside experiences of our own and of our friends' and families' as well. They may not hear about them, necessarily, but they are there.

The thing is, that much time has gone by now, and what is being proposed for this girl's body really crosses a line, ethically, since by law, she is legally dead, and the chances of her actually waking up are - according to experts involved in her care - just about nil, unfortunately. Whatever happened aside (and whatever happened should absolutely be examined), what is done is done, and she has died, by legal and medical definitions. (See, there's no way, really, of saying that that doesn't sound clinical.) There are laws about dead bodies and what can and can't be done with them, and ethical standards as well, which are what hospital spokespeople are referring to when they say they cannot perform surgery (trach and feeding tube) on someone who's dead. It crosses a line medically, legally and ethically. (Not sure if that made sense or if it is complete rambling...)

Looking at it from the mother's point of view is hard to see compassion coming from the hospital. There are conflicting reports on whether the hospital will let another doctor come in to perform the necessary procedures to move her.
The mother has also come out and said the workers at the hospital call her daughter "the body".

So first you have the daughter bleeding profusely while in recovery while nobody seemed to care. Then you have the hospital going back and forth with what they are willing to let the family do as far as transferring her AND being cruel by calling her "the body".

 

[lsyorke]

Looking at it from the mother's point of view is hard to see compassion coming from the hospital. There are conflicting reports on whether the hospital will let another doctor come in to perform the necessary procedures to move her.
The mother has also come out and said the workers at the hospital call her daughter "the body".

So first you have the daughter bleeding profusely while in recovery while nobody seemed to care. Then you have the hospital going back and forth with what they are willing to let the family do as far as transferring her AND being cruel by calling her "the body".

And while the hospital is gagged by HIPAA, we only hear one side the story. As for another doctor coming in to do a trach....it takes more than a doctor to do this and a hospital isn't going to just let an outside physician walk in and do surgery in the best of circumstances.
Its takes time to get on staff at a reputable hospital, even in a temporary situation. Operating room, staff, equipment just to start. I can tell you, that as a nurse I'd want nothing to do with this and would make that clear to my employer. We also haven't heard of any physician coming forward to offer their services.
Yes, it's a horrible situation for the parents, but allowing it to continue, with no hope of recovery, isn't doing anyone any good.