Mom of 13yo on vent fights for 2nd opinion- hate on display

[EVT1]

Although the two patients have different conditions, it amazes me the amount of bile and hatred for this lady and her daughter that were posted to various news sites in almost a 100% reversal of the Terry Schiavo situation.

I wonder why that is......  Give the lady a second opinion- can't blame her for not trusting this hospital if what she says is true:

Source with the least disgusting comments:

www.mercurynews.com/breaking-news/ci_24773831/oakland-emotional-letter-from-jahi-mcmaths-mom-keep

     My daughter sits on life support. I feel like she is on Death Row. The clock is ticking -- ticking down. Children's Hospital Oakland says she is dead. She was not dead when I brought her here on Dec. 9 for a routine tonsillectomy. I put her in their hands, now they want to wash their hands of her.

     "Jahi had an operation. I was told it went well. Then she started bleeding from her mouth. They gave me a cup for her to bleed into and said it was normal. She bled more and more. I couldn't keep up with it. I asked for help, they gave me a bigger bucket. She bled more. They did not answer our pleas for a doctor. Her surgeon never came back. She had a heart attack and her heart stopped beating. Then they came -- then. They shocked her back into life. Now they say she is dead.

     'The hospital says she is legally dead. That they can legally stop her breathing. I am not a lawyer. We called many in the middle of the night Monday as they were coming to unplug her Tuesday night. One answered the call. We stopped them. Every day is a struggle. We fight for Jahi. We have a temporary restraining order until Monday -- then the judge can say my baby is legally dead and Children's can unplug her. It doesn't matter what I say. I never thought I would have to go to court to get a hospital to treat my child.
 
Sad story.

[swamp]

It is a sad story. I'd like to see the hospitals side.

However, the comments make me weep for humanity. People suck.

[The Captain]

Very sad story.  I'm with Swamp and wondering why the family refuses to allow the hospital to disclose their side.  I sincerely hope the nurses did not react the way the mother remembers.

Even in sad cases like this I'm always suspicious when one side is free to spin their tale while sealing the lips of the opposite side.

And yes, the mother is entitled to a second opinion, but doesn't seem to understand that it may be only the machines, and not her daughter's spirit, that is keeping her body warm.

[thyme4change]

I feel like there are two issues here.  The first is the question on if the hospital screwed something up by not responding to the mother's insistence that something was wrong.  The second is if the girl will really "wake up."  Even if you resolve the first issue and say that the hospital was grossly negligent, it won't change the answer to the second question.  Without knowing much, I would guess that girl is gone.  I would be freaking devastated to have my child die after something that sounds so routine.  

[Tennesseer]

If the child is truely brain dead (after the scheduled second opinion review) and unable to survive on her own without mechanical assistance, give the mother some time to accept the reality her child is clinically brain dead.

I know it is expensive to keep folks on life support, but what is another 10 days to get the family through Christmas and the new year.

[swamp]

Dec 23, 2013 10:27:36 GMT -5 thyme4change said:

I feel like there are two issues here.  The first is the question on if the hospital screwed something up by not responding to the mother's insistence that something was wrong.  The second is if the girl will really "wake up."  Even if you resolve the first issue and say that the hospital was grossly negligent, it won't change the answer to the second question.  Without knowing much, I would guess that girl is gone.  I would be freaking devastated to have my child die after something that sounds so routine.  

[mmhmm]

My heart breaks for the child's mother.  All she wants is her little girl back.  At this point, no matter what facts, or logic is thrown at her, she can't accept it.  She's not being willful, IMO. She's being a mother.

I was trying to figure out what the child was doing in the ICU after a tonsillectomy.  That's certainly not standard procedure.  From what I can read, the surgery performed was NOT a simple tonsillectomy.  It was probably a UPPP (Uvulopalatopharyngoplasty), a surgery done for sleep apnea.  It's a more complicated surgery, with a good deal more tissue removed than just the tonsils. In our hospital, both children and adults are placed in ICU for 24 hours after surgery to ensure against complications and achieve pain control.   The complication most watched for is - you guessed it - bleeding.  If, as the mother claims, this child was bleeding profusely, somebody wasn't doing their job.  The mother's claims that the child responds to her may, or may not be valid.  She's warm because she's being kept alive artificially.  What's bothering me, as others have said, is the hospital's inability to release the chart records due to patient confidentiality.

A judge has given the family respite through today.  I don't know what methods have been used to determine whether brain death has actually occurred - again, because the records can't be released.  If I were this mother, I'd give permission to release those records immediately.  Both sides of this story need to be told.  It's hard to advocate in either direction when you only have one side of the "story".

[The Captain]

Speaking to those with medical backgrounds - is it possible for someone to come back after being brain dead?

[mmhmm]

Dec 23, 2013 10:27:36 GMT -5 thyme4change said:

I feel like there are two issues here.  The first is the question on if the hospital screwed something up by not responding to the mother's insistence that something was wrong.  The second is if the girl will really "wake up."  Even if you resolve the first issue and say that the hospital was grossly negligent, it won't change the answer to the second question.  Without knowing much, I would guess that girl is gone.  I would be freaking devastated to have my child die after something that sounds so routine.  

The hospital claims they are investigating what occurred in the ICU.  That child should have been being watched like a hawk!  All these patients are.  Bleeding is a real risk in these cases.  If cups were being used to collect the blood being expelled by this child, as the mother claims, that's a serious breach!

[thyme4change]

mmmhmm - Thanks for the additional information.  I can see why the family doesn't trust the hospital and their diagnosis.  I wouldn't either.  

[mmhmm]

Dec 23, 2013 10:36:07 GMT -5 The Captain said:

Speaking to those with medical backgrounds - is it possible for someone to come back after being brain dead?

I've seen articles in medical journals about such events.  The commonly held medical stance in these cases is the patient was not actually brain dead.  It shows medical error.  If there is any doubt, a radioactive isotope can be injected.  If none of that is taken up by the mid-brain and no flow is observed above the Circle of Willis, the brain is, indeed, dead.  I don't know if that method has been used here, and I'm going from memory so there may be other criteria that must be met.

[mmhmm]

Dec 23, 2013 10:38:56 GMT -5 thyme4change said:

mmmhmm - Thanks for the additional information.  I can see why the family doesn't trust the hospital and their diagnosis.  I wouldn't either.  

I, too, understand, thyme.  Families are absolutely devastated by the loss of a child.  It's just beyond their comprehension.  I wouldn't trust anybody, either!

[Miss Tequila]

I didn't read this specific article but I did read about the case.  As a mom, my heart absolutely breaks for this woman and her family.  I don't know how easily I would be able to accept that my child died from something we view as a simple surgery (yes, I know that all surgery carries risk).

But I'm also not willing to just take the mom's word on what happened.  I want to see the facts from the case before I place blame on the hospital. 

The few comments I read back when I read this story were placing the blame on teh child for being obese.  There should be a special place in hell for people like that.  A child is, for all intents and purposes, dead...have some sympathy. 

[mmhmm]

I think the mother having referred (apparently) to this surgery as a "tonsillectomy" is relevant, as well.  It's my guess this was a lot more than a tonsillectomy.  UPPPs are not simple surgeries!

[justme]

I read an article associated with this that went through some of the steps usually taken to determine someone is brain dead. They said with children they do the test at least twice, and it says two separate Drs independently reached the same conclusion. They mentioned the isotope mmhmm mentioned as well as taking out the ventilator to see if the person begins to breath (if the brain stem was still alive from what I understand the person would start or at least try to breath).

Of course in this case the family hasn't released them to say anything. While this is an awful thing to happen, and I'd probably want a second opinion too (and probably make them do the isotope test since that seems rather conclusive), I can't understand, rationally, the parents position that the doctors just want to get rid of the child and their mistake. I don't see them lying about the results of the test, as her dying doesn't help the hospital at all.

As for comparing it to Terri - she wasn't brain dead. She was breathing on her own, though she did have a feeding tube. Taking away life support was taking away her feeding tube and letting her starve to death because she couldn't eat/drink. (At least I don't think she was on full-fledged life support when she died, but I grew up in the same area so stories over the year about her may have merged in my brain.) From my understanding when someone is brain dead, once you turn the machines off they almost immediately die as there's no activity to keep the heart beating or the lungs breath.

[thyme4change]

Dec 23, 2013 11:13:10 GMT -5 @anne81 said:

My friend's FIL died recently after complications from a type of brain surgery.  When she heard about it from his uneducated family it was all about suing and all the ways the hospital had messed up. Then she went through the records and found that the family had been warned against the surgery, that her FIL went ahead with it when the majority of the advisory surgical committee was against it, etc.  Medical decisions are complex and I think a lot of people having trouble weighing risk.

I'm a pretty educated and intelligent person, and I get over my head pretty quickly when talking about medical things.  I know it sounds judgmental, but the mother didn't strike me as an extremely sophisticated person.  I hope she is able to get a second opinion that brings her some peace.

[justme]

According to this article two doctors from the hospital and three doctors that aren't associated with the hospital have all reached the same conclusion. Now there's another independent doctor examining her today.

[mmhmm]

Dec 23, 2013 15:03:03 GMT -5 justme said:

According to this article two doctors from the hospital and three doctors that aren't associated with the hospital have all reached the same conclusion. Now there's another independent doctor examining her today.

It's really, really hard for parents to accept their baby is gone.  My heart really breaks for them.  It's going to hurt for a long time.

[EVT1]

My point was she deserves to have an independent review- based on her story- and if it is conclusive she will have to accept it.  I found the amount of hatred shocking- and I agree a special place in hell for these people should be in order.

I brought up the Schiavo case because of the stark difference of opinion- very little support for this girl and plenty of blame on the mother, questions of the waste of tax dollars, and other worse things.  Have a very low opinion of humanity after reading some of that- guess it is time to stop looking at them- but like a car crash it is hard not to take a peek- all of the while knowing what you will probably see.

[thyme4change]

Well, of course we were all about saving Schiavo - she was white.

[Tennesseer]

Dec 23, 2013 18:54:24 GMT -5 thyme4change said:

Well, of course we were all about saving Schiavo - she was white.

I am an equal opportunity plug puller.

[thyme4change]

Me too.  

[Miss Tequila]

Dec 23, 2013 16:38:04 GMT -5 EVT1 said:

My point was she deserves to have an independent review- based on her story- and if it is conclusive she will have to accept it.  I found the amount of hatred shocking- and I agree a special place in hell for these people should be in order.

I brought up the Schiavo case because of the stark difference of opinion- very little support for this girl and plenty of blame on the mother, questions of the waste of tax dollars, and other worse things.  Have a very low opinion of humanity after reading some of that- guess it is time to stop looking at them- but like a car crash it is hard not to take a peek- all of the while knowing what you will probably see.

I wasn't for keeping terry schaivo alive. That is not how I would want to live

[Deleted]

Dec 23, 2013 18:57:01 GMT -5 Tennesseer said:

Dec 23, 2013 18:54:24 GMT -5 thyme4change said:

Well, of course we were all about saving Schiavo - she was white.

I am an equal opportunity plug puller.

like you're starting a lawn mower.

[Tennesseer]

Dec 23, 2013 20:08:30 GMT -5 ArchietheDragon said:

Dec 23, 2013 18:57:01 GMT -5 Tennesseer said:

I am an equal opportunity plug puller.

like you're starting a lawn mower.

But with a far more forceful yank.

[jkapp]

Dec 23, 2013 15:05:42 GMT -5 mmhmm said:

Dec 23, 2013 15:03:03 GMT -5 justme said:

According to this article two doctors from the hospital and three doctors that aren't associated with the hospital have all reached the same conclusion. Now there's another independent doctor examining her today.

It's really, really hard for parents to accept their baby is gone.  My heart really breaks for them.  It's going to hurt for a long time.

That was my first thought...it sounds like the mother wants to keep bringing in more doctors until one gives her the answer she wants to hear.  I wonder if she watches too much House MD and thinks there's some brilliant doctor who will diagnose some oddball treatment to save the daughter.  Unfortunately, real life doesn't work that way because real life sucks...

[Tennesseer]

Dec 23, 2013 22:39:54 GMT -5 jkapp said:

Dec 23, 2013 15:05:42 GMT -5 mmhmm said:

It's really, really hard for parents to accept their baby is gone.  My heart really breaks for them.  It's going to hurt for a long time.

That was my first thought...it sounds like the mother wants to keep bringing in more doctors until one gives her the answer she wants to hear.  I wonder if she watches too much House MD and thinks there's some brilliant doctor who will diagnose some oddball treatment to save the daughter.  Unfortunately, real life doesn't work that way because real life sucks...

Real life does not get resolved like a one hour TV drama.

[justme]

www.dailyjournal.net/view/story/150576c9fc4d4c1cabb9503743945c4c/US--Tonsillectomy-Brain-Dead-Girl/#.UrkDV_tWqoY

According to that article, it sounds like jkapp might be right. The family wants to move her to another facility (I presume one that will keep her on the ventilator) and wanted a professor to do the evaluation - one who wrote a book about how the current tests for brain dead aren't correct and that life support only works on the living not those with dead brain.

It seems like it's going to be a tough day for the family tomorrow.

[EVT1]

True- but at least the judge put off any action until after the holiday.  Can't blame the mother though.  Have plenty of blame for every lowlife that attacked her though.  I like free speech and all but some of these people need to be taken out back and beaten with a bike chain.

[mmhmm]

Dec 23, 2013 18:54:24 GMT -5 thyme4change said:

Well, of course we were all about saving Schiavo - she was white.

That sure wasn't true for me, thyme!  Nor, was it true for many I know - albeit, most I talked to about it were medical professionals.  At one point, I saw a picture of the CT of Ms. Shiavo's brain.  The frontal lobe was, in essence, mush, and the rest of the brain was following.  The hind brain, however, was still intact and doing its job.  She was never brain dead and the medical professionals who worked with her never claimed she was.  She was breathing without a ventilator, but she wasn't going to recover - ever.  This case is different, since several doctors have declared this poor girl brain dead.  Just like Ms. Shiavo's parents, however, these parents are unable to accept their child is gone.  If I believed my child had died because of a "simple tonsillectomy", I might feel the same.  I don't know.  The skin color of the victim doesn't mean beans to me in a case like this one.