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Does Mothering Endorse HIV/AIDS denialism - Page 5

post #81 of 120
I just...

I'm speechless. I truly am.
post #82 of 120
Quote:
Originally Posted by daifuku View Post

"It really is about whether or not we are prepared to accept a parent's freedom of choice with an issue like HIV/AIDS. Are we willing to accept freedom of choice in regards to cancer medication? medication for children? vaccinations? circumcision? co-sleeping? homebirth? breastfeeding?"


What about second hand smoke? Seat belts? Lead paint exposure? Corporal Punishment? Why accept and advocate for a parent's freedom of choice to let their children die of AIDS out of ignorance, but not freedom to let their kids develop asthma or lung cancer? Brain damage? Etc? The freedom of choice argument just doesn't cut it here.



I agree there are lines here. But most responsible parents agree that protecting your child from fatal harm is the primary job as a parent. Do AZT drugs and/or denying AIDS result in fatal harm to infants and small children? I would bet yes.

I'm fortunate in that I have not had to make hard choices like that in my life. I do have one dd with a chronic illness and finding the best path for her that damages her body the least with the cooperation of her medical team has been quite the challenge for me and the hubby.
post #83 of 120

D for Denial.

 

 

Quote:
Originally Posted by herbsmd View Post

 


You can't take her death out of context and say four-year-olds dying of pneumonia are beautiful.  No one would agree with such a ridiculous statement, least of all myself.

 

But I believe that the reports which claim that she only had symptoms and a diagnosis a week before her death.  She was treated with an antibiotic which caused nausea and vomiting (common).  She was small for her size, but was otherwise normal.  

 

No one chooses to be born and very few of us choose how we die.  Once a child is born, it is my feeling that you can't retract the effort that got them there in the first place.  Are you intimating that her death could have been prevented by her non-existence?  

 

Now, assuming that we could change the circumstances around the events of her birth, how are we to know that we wouldn't have caused her spontaneous abortion or her termination at 8 months of gestation, or a much more painful and sorrowful death at 19?  We don't.  It's just simple enough to say that she died quickly and with relative (relative to years and years of suffering and a consciousness of disease which young children are not fully capable of possessing) painlessness.

 

There is no such thing as a beautiful death of a four-year-old.  That statement just derailed the argument for no particular good reason.

post #84 of 120
Quote:
Originally Posted by WildKingdom View Post

I just...
I'm speechless. I truly am.
You and I are experiencing an entirely different reality than those who will not accept any WHO or CDC or NIH information that contradicts their beliefs, even if they a) read it and b) understand it. People who google a few links, don't bother to read them, but disseminate potentially dangerous philosophies about how the meds are theoritically worse than the virus, or the tests are wrong, are in a parallel universe where facts as we know them are merely possibilities.

One thing I will say is that it is an enormous industrialized world privilege to sit in contempt and suspicion of drugs that have given many people years they otherwise would not have lived through. An adult choosing to stop treatment is not at all comparable to a parent refusing to give it to their child- this is true for many diseases, including HIV/AIDS.
post #85 of 120
Quote:
Originally Posted by Imakcerka View Post

 

 

So... a picture of health.  Huh... then what happened?

 

Did I say she was a picture of health?  I'm not a denialist and, without reading the autopsy report, I tend to believe the initial diagnosis that she died of PCP.  Never did I imply that she was a picture of health, nor did I imply that four-year-old children dying is a beautiful thing.  Hmmm.....

 

Since the mother was investigated and not found guilty of child neglect, I think it is reasonable to assume that this was not a case of abuse.  Was her mother misguided?  Perhaps, but so many factors go into an argument of that magnitude that it's harder to make an unbiased call.  I believe that her experience as a second-time mother gave her enough knowledge to know whether there was suffering of a concerning magnitude.  In fact, somewhere I read that her illness progressed very rapidly at the end.  I believe (and so did the investigators) that there wasn't a thought about it being so serious because there didn't appear to be any discomfort.  At the moment when her daughter started complaining, she took her to the doctor where the diagnosis was made.  

 

That...the rapid unfolding of a gravely unfortunate circumstance is, at the very least, the course of natural events from some time during/after her birth.  Nature is cruel, but there are so many times that I think medicine and knowledge can amplify the cruelty...particularly with little children.  There is still, to me, a sense of serenity in hearing that she suffered very little.

 

If anyone is looking to argue the fact that she did not suffer, you have to provide some kind of evidence to say that she suffered...and that she suffered more than she would have if she had lived longer with medication.  
 

post #86 of 120
oh my god. I can't even. . .irked.gif
post #87 of 120
Quote:
Originally Posted by herbsmd View Post

 

Did I say she was a picture of health?  I'm not a denialist and, without reading the autopsy report, I tend to believe the initial diagnosis that she died of PCP.  Never did I imply that she was a picture of health, nor did I imply that four-year-old children dying is a beautiful thing.  Hmmm.....

 

Since the mother was investigated and not found guilty of child neglect, I think it is reasonable to assume that this was not a case of abuse.  Was her mother misguided?  Perhaps, but so many factors go into an argument of that magnitude that it's harder to make an unbiased call.  I believe that her experience as a second-time mother gave her enough knowledge to know whether there was suffering of a concerning magnitude.  In fact, somewhere I read that her illness progressed very rapidly at the end.  I believe (and so did the investigators) that there wasn't a thought about it being so serious because there didn't appear to be any discomfort.  At the moment when her daughter started complaining, she took her to the doctor where the diagnosis was made.  

 

That...the rapid unfolding of a gravely unfortunate circumstance is, at the very least, the course of natural events from some time during/after her birth.  Nature is cruel, but there are so many times that I think medicine and knowledge can amplify the cruelty...particularly with little children.  There is still, to me, a sense of serenity in hearing that she suffered very little.

 

If anyone is looking to argue the fact that she did not suffer, you have to provide some kind of evidence to say that she suffered...and that she suffered more than she would have if she had lived longer with medication.  
 

 

 

Empathy over trying really really really hard to be right goes a long way. 

post #88 of 120
Quote:
Originally Posted by bri276 View Post


You and I are experiencing an entirely different reality than those who will not accept any WHO or CDC or NIH information that contradicts their beliefs, even if they a) read it and b) understand it. People who google a few links, don't bother to read them, but disseminate potentially dangerous philosophies about how the meds are theoritically worse than the virus, or the tests are wrong, are in a parallel universe where facts as we know them are merely possibilities.
One thing I will say is that it is an enormous industrialized world privilege to sit in contempt and suspicion of drugs that have given many people years they otherwise would not have lived through. An adult choosing to stop treatment is not at all comparable to a parent refusing to give it to their child- this is true for many diseases, including HIV/AIDS.

 

Woah...just to make sure you don't lump me into the denialist camp, it would be helpful for me to stake my claim that my personal opinion is most often on the same page as the WHO, the CDC, and the NIH.  Then again, it isn't eleven years ago and no one has told me I wasn't HIV positive, or might be, and should take drugs that could complicate or terminate my pregnancy after I've just birthed and nursed a perfectly healthy baby. 

 

Like I said, I birthed my three babies in the hospital with pitocin, and two with epidurals.  My children are all up-to-date on vaccinations and we have yearly doctor visits with a very mainstream pediatrician.  BUT, I recognize the social and philosophical importance of defending informed choice--INFORMED means that you have to account for the evidence WHILE taking into regard the potential risks.  KNOWING what you DON'T KNOW is part of calculating your risk.  If you are inundated with unknowns, what choice do you choose?  Necessarily intervention?  New medications and most interventions come with risks.  The pharmaceutical companies and doctors are not always aware of (or do not always disclose) every calculable risk.  

 

Or do doctors always know everything first? 


Edited by herbsmd - 7/11/12 at 2:15pm
post #89 of 120
Quote:
Originally Posted by Imakcerka View Post

 

 

Empathy over trying really really really hard to be right goes a long way. 

 

So you challenge the child-welfare investigators' findings?  I didn't suspect that they didn't do their job, and I didn't ever get the feeling (in reading a number of Maggiore's interviews) that this was egotistically motivated.  I think she felt that she was right and thought that she was protecting her child.  I don't think she was given a good chance to consider the consequences, partially because of the hype surrounding her healthy son, and partially because new treatment had just been found to be potentially unsafe.  

post #90 of 120

And just to make any other opinions known...I believe that the data supports a highly-likely conclusion that HIV causes AIDS.  I know for certain that it's an unprovable claim (that's a philosophical issue), but I believe that there's just as much evidence to support the HIV-AIDS connection as there is supporting the polio virus-polio connection or the herpes virus-herpes connection (though there's no way to prove that these viruses cause their respective diseases....it's just a high statistical probability which is NOT the same thing as "proof").  

 

So...no, I don't think any of my opinions would make me a denialist.  But I see the importance of arguing treatment options...

post #91 of 120

I think this lifestyle (or whatever you want to call it, doesn't really matter) is a choice, and should be respected. Parents do what they think is best for their children, they don't have some hidden agenda to harm or kill them.

Who are you to say what is best for someone else, someone that you've never met and have no interest in other than the topic of debate?

 

MDC supports a wide range of viewpoints, some clearly more popular than others. But it's really sad that we are all so judgmental and harsh towards each other. 

post #92 of 120
I think it's fine to judge a parent who withholds treatment with a high probability of sustaining both life and quality of life from their child. Of all the things people judge other parents for at MDC, this is the parenting choice that people are saying "don't judge" about?
post #93 of 120
Quote:
Originally Posted by eclipse View Post

I think it's fine to judge a parent who withholds treatment with a high probability of sustaining both life and quality of life from their child. Of all the things people judge other parents for at MDC, this is the parenting choice that people are saying "don't judge" about?

 

I'm not saying that I wouldn't be concerned today.  I think that today we have ten years of evidence behind us to give us much better indications of what the risk/benefit ratio is.  But I think things were vastly different ten years ago.  If we've really only been understanding this disease for 35-ish years, 10 years is almost 1/3 of the entire statistical package...and, being the most recent ten years makes it the most important.  

 

Today, if it happened to a friend of mine, I would feel compelled to give her my personal endorsement (though, I'm not a medical professional and so I don't think I'd emphasize my opinion) to strongly consider the medication.  But, in the long run, the decision would be her burden and would be filled with a host of feelings that I would merely try my best to understand.  It would be absolutely tragic to have to watch a repeat of this incident.  I don't know that I would be the kind of friend who could support that kind of a choice today.

post #94 of 120
Quote:
Originally Posted by herbsmd View Post

 

I'm not saying that I wouldn't be concerned today.  I think that today we have ten years of evidence behind us to give us much better indications of what the risk/benefit ratio is.  But I think things were vastly different ten years ago.  If we've really only been understanding this disease for 35-ish years, 10 years is (statistically) almost 1/3 of the entire statistical package...and, being the most recent ten years makes it the most important.  

 

Agreed.  I think there is a lot of judgment being made against a woman who was doing the best she could with the information she had at the time.

 

I agree with imakcerka on empathy over being right, but it applies to this situation as well.

 

Imagine finding yourself pregnant.....

 

Now imagine the doctors telling you that you probably have this disease (although pregnancy can give false negatives) and that you should go on this brand new drug that has not been tested much, might cause miscarriage or birth defects, but you really, really need to go on it.  I can understand her hesitation.

 

I would not understand a mothers hesitation to follow medical protocol in 2012 given the evidence we have now have - but in the late 1990's (when some of the MDC articles were written) or 2000 (when Eliza was born), yeah, I understand hesitation......


Edited by purslaine - 7/11/12 at 4:07pm
post #95 of 120
Quote:
Originally Posted by bri276 View Post


You and I are experiencing an entirely different reality than those who will not accept any WHO or CDC or NIH information that contradicts their beliefs, even if they a) read it and b) understand it. People who google a few links, don't bother to read them, but disseminate potentially dangerous philosophies about how the meds are theoritically worse than the virus, or the tests are wrong, are in a parallel universe where facts as we know them are merely possibilities.
 

Where are you getting this from? Who are you talking about? 

post #96 of 120
Sorry if you don't have time to read back, Kathy. What I said is pretty obvious, in context.
post #97 of 120
I'm pretty sure that when Eliza was born, and certainly as she got older, AZT was pretty much the best evidence based treatment for HIV available. Eliza Jane was born the same year my oldest son was, and I knew that - and I hadn't even tested positive for HIV, which would have sent me scrambling for the latest *scientific* research on the virus. IIRC, her mother wouldn't even let her be tested for HIV. Yeah, sorry, I'm going to judge away on that.
post #98 of 120
Quote:
Originally Posted by eclipse View Post

 IIRC, her mother wouldn't even let her be tested for HIV. Yeah, sorry, I'm going to judge away on that.

Well, if this is correct it is somewhat judge-worthy.

 

As time went on, and evidence mounted in favour of AZT, I think she should have considered testing.

 

In any event, I am going to bow out of this conversation.  I have no interest in crucifying a dead women for choices she made - choices, that certainly at the beginning, she did lack evidence and clarity on.  Yes, she got it wrong - and did she ever pay for it.  It could have gone the other way - hindsight is 100% and all that.

 

I am also not interested in critisizing MDC for printing articles 12 years ago that adressed HIV/AIDS and motherhood.  Why would I?  They were good articles that explored what some HIV positive moms-to-be were going through.  This is what MDC does (or did) - it asks probing questions of mothering and practices pertaining to it. 

post #99 of 120
Quote:
Originally Posted by kathymuggle View Post

Well, if this is correct it is somewhat judge-worthy.

 

As time went on, and evidence mounted in favour of AZT, I think she should have considered testing.

 

In any event, I am going to bow out of this conversation.  I have no interest in crucifying a dead women for choices she made - choices, that certainly at the beginning, she did lack evidence and clarity on.  Yes, she got it wrong - and did she ever pay for it.  It could have gone the other way - hindsight is 100% and all that.

 

I am also not interested in critisizing MDC for printing articles 12 years ago that adressed HIV/AIDS and motherhood.  Why would I?  They were good articles that explored what some HIV positive moms-to-be were going through.  This is what MDC does (or did) - it asks probing questions of mothering and practices pertaining to it. 

 

 

I think as time goes on people wonder if the belief is still the same.  I think it's worth visiting for clarification. 

post #100 of 120
Quote:
Originally Posted by eclipse View Post

I'm pretty sure that when Eliza was born, and certainly as she got older, AZT was pretty much the best evidence based treatment for HIV available. Eliza Jane was born the same year my oldest son was, and I knew that - and I hadn't even tested positive for HIV, which would have sent me scrambling for the latest *scientific* research on the virus. IIRC, her mother wouldn't even let her be tested for HIV. Yeah, sorry, I'm going to judge away on that.

 

I think AZT was the drug of choice at the time, as the HAART therapy was the highly-successful one which was also found to have serious side effects.  I think she was worried about birth defects during pregnancy or losing the pregnancy, and also didn't want her daughter tested because of her test results which turned out to be positive, inconclusive, negative, and then positive again.  But she DID have her son tested.............  Why would she have one tested and not the other?  I just confirmed that she did not test Eliza--at least there was no record of a test in her medical records.  Do you think she had her tested privately?  I read somewhere (but I can't find it now and I'm too tired) that she had her son tested multiple times (sounds fearless, no?) and said that he never tested positive.  Why was she not as fearless with her daughter?

 

Are her husband and son still alive?  I suppose so since there is no new news on this case.  

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