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#61 of 120 Old 07-07-2012, 07:44 AM
 
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As a new member, I don't think it is at all inappropriate to ask MDC to update an outdated stance on a topic that science has clearly and irrefutably proven.  As another poster pointed out, while there may have been confusion a decade or two ago, there certainly isn't now, and Maggiore and her daughter's untimely deaths are just another bit of proof. 

 

Second, I agree entirely with NoraFlood above.  I am willing to be skeptical and open minded when the evidence supports such open mindedness or when the science itself is unclear.  But being a part of a community that even tangentially supports the extremely dangerous belief that HIV does not cause AIDS goes beyond any "alternative" approaches to parenting and enters the realm of conspiracy theories.  As a political scientist, I am painfully aware of the incredible harm done in Africa by AIDS deniers and the fact that activists like Maggiore were influential in encouraging some African governments to turn away from scientifically-based treatments to wholly ineffective treatments like garlic (in South Africa, for example), thus causing untold deaths and encouraging the spread of the disease. 

 

Ultimately, I came to Mothering in the first place because, as a pregnant woman, I felt that science didn't support the medicalized version of pregnancy and birth we practice in the West.  And I thought this would be a place where science and evidence would trump allegiance to a particular ideology or creed from whatever direction.  Peggy's response has only demonstrated that she, at least, does not care about science but in fact holds to ideas that have not only been proven false, but deadly.  Like others above, I don't think I'm comfortable participating further (and certainly not supporting, financially or otherwise) such a person or group until a retraction is printed or at least an actual conversation is begun.

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#62 of 120 Old 07-07-2012, 03:58 PM
 
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In the original post it clearly states the link provided is to an article on breastfeeding with HIV, NOT does HIV cause AIDS.
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#63 of 120 Old 07-07-2012, 07:16 PM
 
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I have been following this thread too.  I also think it to feel hostile. 

Lay people will think all kinds of things--I myself am a lay-person and, largely because of a lack of trust of the medical community, I would consider myself skeptical of all kinds of medical claims.  
 

I worked for ten years as a medical illustrator.  I was originally a pre-med student with a lot of art/art history credits when, early on in my junior year a study that I had participated in for the past two years was written up with falsified data.  I was so put off, and too young and naive and quiet to speak up about it, that I promptly changed my major to art (the only major I could graduate on time with).  I then went to graduate school in philosophy.  Then I went to graduate school again to become an educator.  

 

While in graduate school and after my first son was born, I was an artist for two doctors who also falsified data.  In ten years, perhaps that's not a bad number...but it was enough to give me a heavy dose of skepticism whenever I read any kind of quantitative research.  In defense of people like Maggiore or perhaps Peggy, I have to say that anyone who at least brings to light the devil's-advocate story is helping the integrity of the argument as a whole.  That's not to say that, in the interim, people won't die when it could have been prevented--they certainly do.  But then again people die (or grossly lose their quality of life) in the hands of medicine all the time when it could have been prevented as well.  (Not just medical mistakes, but things like falsified research, a host of ills which stem from capitalistic greed, and we could have a long discussion about the pharmaceutical culpability of prescribing highly-addictive pain medications.  All of these things help to provide skepticism and animosity toward the medical community--a skepticism that, as we can clearly see, could be lethal.)  

 

We all have probably heard the saying, "with great power comes great responsibility."  The medical community has power--a lot of it.  Because of that power they have two gigantic responsibilities (in my book).  First, they can't be unethical--not any of them, and not ever.  If they want to hold the power that they have, they must hold in the highest regard their ethical standards.  Second, they have to be information providers, and excellent ones at that.  

 

As far as the ethical ramifications go, yes, I know that doctors take the Hippocratic oath.  Then they promptly forget it--at least many of the ones I've met: the ones that have told me that I didn't really need to breastfeed or the ones that routinely prescribe my mother-in-law with 300+ highly-addictive pain medications each month.  Or the one who advised me to give my son a CT scan after a concussion until my husband (who used to be a veterinarian before switching to philosophy twenty years ago) called and asked if he had blood on his eardrums (no) or problems with balance or eye-tracking (no) or any signs that would indicate that kind of procedure (not really), after which time all of the doctors suddenly said that they supported our decision to NOT give him the procedure (which raises his risk of a brain tumor by 700 times).  You know, these are the things that lay people have to deal with, so when I read any scientific study or when any doctor tells me that my child "needs" something, I certainly don't have a lot of faith in their assessment, however honest they may be.  Probably some of the time I'm wrong--perhaps Maggiore was wrong.  But the medical community has been wrong too...and how often do they admit it?  Where is their integrity?

And medical information needs to be disseminated, dissected, and discussed in larger circles.  No more expensive medical journals--the information needs to be totally free and available to everyone.  And they need to teach people, the layest of the lay-people, exactly what it means.  And not just in little pamphlets either, but by addressing people and dissenting groups individually, on a one-to-one basis if needed, to continue to uphold their reputation.  And on message boards, they could do better by being wholly understanding and explaining the facts that they know while trying their best to understand the extraordinarily powerful impulses of human nature and self-preservation.    

I read the articles.  I think they did an excellent job of polemicizing--of opening up the discussion for those who may be going through the same thing.  And I looked at the Alive and Well website and I got the feeling that there are a lot of people on that website who were given a traumatic diagnosis and who weren't cared for properly in the aftermath causing all kinds of mistrust issues in the medical community.  Who can blame them?  Who here is suffering from a life-threatening diagnosis?  My heart goes out to all of them.  And, as Peggy said, they're putting the devil's advocate argument out there...the burden of proof and of honesty and of education is now with the medical community.  I have heard less coverage of HIV/AIDS in the news in the last ten years leading me to wonder what all of the hype was about when I was a kid...and where did the hype go except in Africa where people die of all kinds of preventable things all the time.  How is the medical community upholding their burden of proof?  The truth is that they probably aren't.  

 

As for Peggy, I did think that people were jarring in their responses and how dare they come on her mothering forum and accuse and demand responses for what is already proper journalism.  This is a forum for women where we learn to weave together the threads of life into a pattern that will eventually be uniquely our own.  There can be no one answer that will ever satisfy every woman--that is why we all need one another's answers to these questions to find where our own heart lies.  Peggy is not the mother of all mothers--she is a mother like us, and one who has dedicated her life to standing up against ills of all kinds in defense of motherhood...a cause so noble I could only hope one day might be etched on my own tombstone.  And if, for reasons of sympathy or empathy or nostalgia or just as a supporter of devil's advocates she is on the board of directors for any particular cause, her personal life does not have to be reflected in every corner of Mothering and it certainly doesn't have to be defended.  

Peggy, I think you've done a fantastic job over the years.  I used to get my girlfriend's old copies of Mothering when she was through with them and half of the time I would just stop after your editorial...it was always so down-to-earth and warm and a good reminder of the path that we as mothers are gifted with.  I have sometimes disagreed with some articles in the magazines but they have always made me think. I have always felt that your impulse for this magazine was wholehearted, capable, and full of moral integrity.  That is more than I can say I have ever felt from the medical community.  

If there is ever an updated article, I am sure it will be as currently applicable as these ones probably were in their time.  

Maggie

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#64 of 120 Old 07-08-2012, 05:16 AM
 
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I have been following this thread too.  I also think it to feel hostile. 

Lay people will think all kinds of things--I myself am a lay-person and, largely because of a lack of trust of the medical community, I would consider myself skeptical of all kinds of medical claims.  
 

I worked for ten years as a medical illustrator.  I was originally a pre-med student with a lot of art/art history credits when, early on in my junior year a study that I had participated in for the past two years was written up with falsified data.  I was so put off, and too young and naive and quiet to speak up about it, that I promptly changed my major to art (the only major I could graduate on time with).  I then went to graduate school in philosophy.  Then I went to graduate school again to become an educator.  

 

While in graduate school and after my first son was born, I was an artist for two doctors who also falsified data.  In ten years, perhaps that's not a bad number...but it was enough to give me a heavy dose of skepticism whenever I read any kind of quantitative research.  In defense of people like Maggiore or perhaps Peggy, I have to say that anyone who at least brings to light the devil's-advocate story is helping the integrity of the argument as a whole.  That's not to say that, in the interim, people won't die when it could have been prevented--they certainly do.  But then again people die (or grossly lose their quality of life) in the hands of medicine all the time when it could have been prevented as well.  (Not just medical mistakes, but things like falsified research, a host of ills which stem from capitalistic greed, and we could have a long discussion about the pharmaceutical culpability of prescribing highly-addictive pain medications.  All of these things help to provide skepticism and animosity toward the medical community--a skepticism that, as we can clearly see, could be lethal.)  

 

We all have probably heard the saying, "with great power comes great responsibility."  The medical community has power--a lot of it.  Because of that power they have two gigantic responsibilities (in my book).  First, they can't be unethical--not any of them, and not ever.  If they want to hold the power that they have, they must hold in the highest regard their ethical standards.  Second, they have to be information providers, and excellent ones at that.  

 

As far as the ethical ramifications go, yes, I know that doctors take the Hippocratic oath.  Then they promptly forget it--at least many of the ones I've met: the ones that have told me that I didn't really need to breastfeed or the ones that routinely prescribe my mother-in-law with 300+ highly-addictive pain medications each month.  Or the one who advised me to give my son a CT scan after a concussion until my husband (who used to be a veterinarian before switching to philosophy twenty years ago) called and asked if he had blood on his eardrums (no) or problems with balance or eye-tracking (no) or any signs that would indicate that kind of procedure (not really), after which time all of the doctors suddenly said that they supported our decision to NOT give him the procedure (which raises his risk of a brain tumor by 700 times).  You know, these are the things that lay people have to deal with, so when I read any scientific study or when any doctor tells me that my child "needs" something, I certainly don't have a lot of faith in their assessment, however honest they may be.  Probably some of the time I'm wrong--perhaps Maggiore was wrong.  But the medical community has been wrong too...and how often do they admit it?  Where is their integrity?

And medical information needs to be disseminated, dissected, and discussed in larger circles.  No more expensive medical journals--the information needs to be totally free and available to everyone.  And they need to teach people, the layest of the lay-people, exactly what it means.  And not just in little pamphlets either, but by addressing people and dissenting groups individually, on a one-to-one basis if needed, to continue to uphold their reputation.  And on message boards, they could do better by being wholly understanding and explaining the facts that they know while trying their best to understand the extraordinarily powerful impulses of human nature and self-preservation.    

I read the articles.  I think they did an excellent job of polemicizing--of opening up the discussion for those who may be going through the same thing.  And I looked at the Alive and Well website and I got the feeling that there are a lot of people on that website who were given a traumatic diagnosis and who weren't cared for properly in the aftermath causing all kinds of mistrust issues in the medical community.  Who can blame them?  Who here is suffering from a life-threatening diagnosis?  My heart goes out to all of them.  And, as Peggy said, they're putting the devil's advocate argument out there...the burden of proof and of honesty and of education is now with the medical community.  I have heard less coverage of HIV/AIDS in the news in the last ten years leading me to wonder what all of the hype was about when I was a kid...and where did the hype go except in Africa where people die of all kinds of preventable things all the time.  How is the medical community upholding their burden of proof?  The truth is that they probably aren't.  

 

As for Peggy, I did think that people were jarring in their responses and how dare they come on her mothering forum and accuse and demand responses for what is already proper journalism.  This is a forum for women where we learn to weave together the threads of life into a pattern that will eventually be uniquely our own.  There can be no one answer that will ever satisfy every woman--that is why we all need one another's answers to these questions to find where our own heart lies.  Peggy is not the mother of all mothers--she is a mother like us, and one who has dedicated her life to standing up against ills of all kinds in defense of motherhood...a cause so noble I could only hope one day might be etched on my own tombstone.  And if, for reasons of sympathy or empathy or nostalgia or just as a supporter of devil's advocates she is on the board of directors for any particular cause, her personal life does not have to be reflected in every corner of Mothering and it certainly doesn't have to be defended.  

Peggy, I think you've done a fantastic job over the years.  I used to get my girlfriend's old copies of Mothering when she was through with them and half of the time I would just stop after your editorial...it was always so down-to-earth and warm and a good reminder of the path that we as mothers are gifted with.  I have sometimes disagreed with some articles in the magazines but they have always made me think. I have always felt that your impulse for this magazine was wholehearted, capable, and full of moral integrity.  That is more than I can say I have ever felt from the medical community.  

If there is ever an updated article, I am sure it will be as currently applicable as these ones probably were in their time.  

Maggie

 

First, I would like to know who told you that a head CT increases the risk of a brain tumor by 700x.  That's just wrong.  It will increase the risk of cancer by 0.036%.  There are many radiation risk calculators available online.  

 

Second, regarding HIV and AIDS-  you ask this- "I have heard less coverage of HIV/AIDS in the news in the last ten years leading me to wonder what all of the hype was about when I was a kid...and where did the hype go except in Africa where people die of all kinds of preventable things all the time.  How is the medical community upholding their burden of proof?  The truth is that they probably aren't."

 

Where did the hype go?  Thanks to medical research and patient advocacy, there are amazing medical treatments for HIV now.  People are living with HIV as a chronic disease.  They don't die in a quick, horrible fashion the way they did before.  It's just not as newsworthy.

 

When I started my medical residency in NYC, it was the very beginning of the HAART (highly active anti-retroviral therapy) era.  We had an entire floor devoted to AIDS patients.  There were so many, though, that they overflowed that floor and were in all areas of the hospital.  Not a single day went by when I didn't have a patient die of AIDS.  I could diagnose PCP pneumonia from across the room with one glance.  That's how common it was.  I learned how to do lumbar punctures on an unfortunate gentleman with cryptococcal meningitis whose intracranial pressure was so high that he needed daily LPs.  I saw a young woman come in with such a virulent strain of staph aureus endocarditis that she ruptured her aortic valve before my eyes and died.  

 

Then something started to happen.  Fewer and fewer AIDS patients were in the hospital.  I was still seeing them in clinic, but they weren't getting sick anymore.  By the time I finished my residency, the AIDS ward had closed.  Not enough patients.  They didn't disappear. They didn't all die.  They were just doing fine.  Why?  They were taking amazing combinations of medications.  The medication regimens had become hugely simplified.  They were now living with a chronic disease, not dying of AIDS.

 

I still have patients with HIV.  Now I get to nag them to exercise and watch their cholesterol, just like any of my other patients.  For them, one of the hardest thing to adjust to is the knowledge that they are likely to live a normal lifespan.  They watched huge numbers of their friends and loved ones die, and they always expected to join them.  But here they are.  Once in a while, we talk about the bad old days of AIDS.  It was an amazing an horrifying time- horrifying as people died right and left, but amazing to see some literally come back from the brink as medications improved.  

 

Having seen what I've seen, I have no patience for the "devils advocate" role that you espouse.  That's playing fast and loose with people's lives.  This is not theoretical- it's factual history.  Christine Maggiore's actions led to the death of her 3 year old baby, and eventually her own death.  You say that the burden of proof is with the medical community.  I disagree.  The burden of proof lies with those making the outlandish claims that HIV does not cause AIDS and that HIV meds are poison.  Medical science should not have to waste time and resources responding to that.  

 

Anyway, that's my 2 cents- from someone who has been on the front lines over the past 20 years.

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#65 of 120 Old 07-08-2012, 07:26 AM
 
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First, I would like to know who told you that a head CT increases the risk of a brain tumor by 700x.  That's just wrong.  It will increase the risk of cancer by 0.036%.  There are many radiation risk calculators available online.  

 

Second, regarding HIV and AIDS-  you ask this- "I have heard less coverage of HIV/AIDS in the news in the last ten years leading me to wonder what all of the hype was about when I was a kid...and where did the hype go except in Africa where people die of all kinds of preventable things all the time.  How is the medical community upholding their burden of proof?  The truth is that they probably aren't."

 

Where did the hype go?  Thanks to medical research and patient advocacy, there are amazing medical treatments for HIV now.  People are living with HIV as a chronic disease.  They don't die in a quick, horrible fashion the way they did before.  It's just not as newsworthy.

 

When I started my medical residency in NYC, it was the very beginning of the HAART (highly active anti-retroviral therapy) era.  We had an entire floor devoted to AIDS patients.  There were so many, though, that they overflowed that floor and were in all areas of the hospital.  Not a single day went by when I didn't have a patient die of AIDS.  I could diagnose PCP pneumonia from across the room with one glance.  That's how common it was.  I learned how to do lumbar punctures on an unfortunate gentleman with cryptococcal meningitis whose intracranial pressure was so high that he needed daily LPs.  I saw a young woman come in with such a virulent strain of staph aureus endocarditis that she ruptured her aortic valve before my eyes and died.  

 

Then something started to happen.  Fewer and fewer AIDS patients were in the hospital.  I was still seeing them in clinic, but they weren't getting sick anymore.  By the time I finished my residency, the AIDS ward had closed.  Not enough patients.  They didn't disappear. They didn't all die.  They were just doing fine.  Why?  They were taking amazing combinations of medications.  The medication regimens had become hugely simplified.  They were now living with a chronic disease, not dying of AIDS.

 

I still have patients with HIV.  Now I get to nag them to exercise and watch their cholesterol, just like any of my other patients.  For them, one of the hardest thing to adjust to is the knowledge that they are likely to live a normal lifespan.  They watched huge numbers of their friends and loved ones die, and they always expected to join them.  But here they are.  Once in a while, we talk about the bad old days of AIDS.  It was an amazing an horrifying time- horrifying as people died right and left, but amazing to see some literally come back from the brink as medications improved.  

 

Having seen what I've seen, I have no patience for the "devils advocate" role that you espouse.  That's playing fast and loose with people's lives.  This is not theoretical- it's factual history.  Christine Maggiore's actions led to the death of her 3 year old baby, and eventually her own death.  You say that the burden of proof is with the medical community.  I disagree.  The burden of proof lies with those making the outlandish claims that HIV does not cause AIDS and that HIV meds are poison.  Medical science should not have to waste time and resources responding to that.  

 

Anyway, that's my 2 cents- from someone who has been on the front lines over the past 20 years.

 

"First, I would like to know who told you that a head CT increases the risk of a brain tumor by 700x.  That's just wrong.  It will increase the risk of cancer by 0.036%.  There are many radiation risk calculators available online."  

 

The third doctor we saw at Children's Hospital gave me the number 700x.  Perhaps he was wrong or perhaps there is a new study out there which isn't used in the algorithms for the current calculations?  I don't know...I faithfully took a doctor's word for that number!  If you want to say that he was fibbing--I can't see why he would be--it doesn't help your argument at all.  He agreed with me after my husband had called and it is possible that he said something like "...up to 700x", but I clearly remembered that number.  If a doctor gave me a false number, I'm already angry at him, whether he was agreeing with me or not.  

 

"Having seen what I've seen, I have no patience for the "devils advocate" role that you espouse.  That's playing fast and loose with people's lives.  This is not theoretical- it's factual history.  Christine Maggiore's actions led to the death of her 3 year old baby, and eventually her own death.  You say that the burden of proof is with the medical community.  I disagree.  The burden of proof lies with those making the outlandish claims that HIV does not cause AIDS and that HIV meds are poison.  Medical science should not have to waste time and resources responding to that."

 

I don't have patience for my grandmother's surgeon who killed her in a surgery that she didn't need (he was later sued for malpractice in the same situation by three other families and lost his license).  I never knew my grandmother and my mother lost her mother when she was in her mid 20s unnecessarily.  That was playing fast and loose with a life, and that was within the medical community.  Now--you don't have patience and I don't have patience.  Where does that get us?  

Instead, let's both try to have patience and see why people do what they do so that, when the chance arises again, we'll be able to stop it, not just say that we don't have patience.

And every devil's advocate argument is helpful to the structure and strength of the argument as a whole--that doesn't mean that we have to listen to arguments from years ago and pretend that it's the same one that's going on today.  These arguments are always changing, bit by bit, until they disappear completely.  The medical community is actually strengthened by these arguments, however much of a pain-in-the-rear it is for doctors to have to contend with them over and over again.  

 

"Where did the hype go?  Thanks to medical research and patient advocacy, there are amazing medical treatments for HIV now.  People are living with HIV as a chronic disease.  They don't die in a quick, horrible fashion the way they did before.  It's just not as newsworthy."

 

Whether it's NBC newsworthy or FOX newsworthy is not the only kind of news I'm talking about.  I think the kind of information overhaul I'm imagining is unlikely to happen--but it is still the burden of the medical community to make sure that their information is disseminated and to talk to people who are in groups such as Alive and Well to bridge the gap.  An effort needs to be made within the medical community to understand medical skeptics, or this situation will never change.  After all, medicine is intervention--it is not a part of the original course of natural events.  If you want to intervene in someone's life, you have to earn that right.  For pharmaceutical companies, that effort could mean publishing a number of books that stay current with research and break it down into lay terms that more people can understand.  For doctors, it means making sure that your bedside manner has you seeing each new patient as if they were your first one (just like we as educators have to see our students).  In other words, forget about everything you've learned when you talk to your patient--your patient doesn't know that you've been on the front lines for years and they don't know what you've seen.  They don't know that you're honest and ethical, and they don't know that you have their best interests at heart.  You have to win them over every single time.  Teachers practice this (some doctors and other people who work in public relations do this) and it is a big help for winning over your students/patients/customers opinions and for opening up the lines of healthy communication.   

 

I do hear what you're saying, WildKingdom.  Sometimes I hear something on the news (sometimes it isn't even true!) and I know that I'm going to have six or seven parents who want to have lengthy phone calls about something that's happening in the educational world and how, exactly, I'm planning on dealing with it in class.  I roll my eyes a hundred times before the first phone call hits.  I'm human too.  But it never works to roll my eyes at any of those parents.  Never.  I've learned that it's really helpful to talk to parents in a big group, and to let them have the final say.  If I want that final say to incorporate what I think is right, I have to come up with a really good argument that explains why I think it's right.  If I can't come up with one, perhaps I'm not right after all or maybe I am not hearing my parents correctly.  Either way, the burden is on my shoulders...not theirs.  

 

And just like I'm an educator even when I'm on this forum, you're also still a doctor.  You can still have bedside manner with people who aren't your patients.  And I can still have patience with people who are still learning.  

 

For what it's worth, I've birthed all three of my children in the hospital--all three with pitocin (my water broke), and two with epidurals.  My children are all up-to-date on their vaccinations and I let my Jewish ob circumcise my boys.  Even with all of my skepticism, I'm a critical thinker at heart and I still listen to doctors with my critical-thinking skills intact and my emotions in check.  That is not to say, however, that I think everyone is going to have the philosophical poise that I have which has come from a lot of reading, a lot of study, and endless argumentation with very wise individuals.  And I know that sometimes my emotions can still get the best of me too--especially when my mothering instincts are called into play.  

 

And also I know people with AIDS.  I have heard, firsthand, the struggle that they have of living when their friends/partners didn't make it.  And I also know about the HAART therapies--one of our family friends is Ian Gilson.  I grew up with his daughter and he came to speak to our school every year about HIV/AIDS since we were in fourth grade.  We have always been neighbors, first in the suburbs and now in the city.  

 

But what I know most of all (from my years as an educator) is that education can only take place in a non-hostile environment.  If a person simply wants to sound knowledgeable and to come across as impatient with all of those "crazies" who don't know any better...then I guess that's their prerogative.  If they want to participate in an argument, then they have to accept the positions that all people start from (even if they are clearly wrong from the experientally-educated vantage point) and be patient with their arguments.  If one can't be patient, they probably shouldn't argue.    

Thank you for your stories...they are candid and meaningful, and they do wonders to help people understand what doctors see in their practice and what HIV/AIDS patients see in their lives.  I hope that therapies continue to improve and that people continue to argue those therapies to make sure they're continually safe and effective, especially for mothers and their babies.  

 

Maggie

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The medical community cannot be assumed to be correct just because of being the medical community! Doctors make mistakes. Studies get proven wrong. Medications are approved and used quickly, making the patients part of an experiment. I gave that kind of trust once, and suffered because of it. I will now always exercise my right to make my own decisions, since I am the one suffering the consequences. And I have limited patience for anyone from the, or supporting the, medical community who unwilling to talk to me as an intelligent person and provide information calmly and respectfully.
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Thanks to herbsmd ! And, thanks to everyone for getting the conversation back on track. 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? In each of these cases, there is a strong, accepted dogma that criticizes, sometimes demonizes, those who reject the dogma. Where do we draw the line in regards to freedom of choice? Can there be a line if there is actual freedom?

 

This is where Christine Maggiore comes in, especially for those of you who actually blame her for her death and the death of her daughter. Do we only grant personal liberty if everything turns out OK? The reality of Christine's situation is much more complex than you realize, as are most people's situations. The independent analysis of her daughter's death reported that she died of an allergic reaction to medication. What mother under normal circumstances would not be weakened by the death of her child? Christine had to endure this as well as constant media attacks and legal challenges. Law and Order aired a show based on her life and demonizing her several months before her death. Christine had tested positive, negative and indeterminate over the years, but she took care of her health as though she were positive and was seldom ill. The official cause of her death was pneumonia; I think she died of a broken heart. Certainly those who knew her were rocked by her death, but the bottom line is whether or not she got to choose. She was never found to be negligent as she was investigated by social services regularly. It's impossible to say if she and her daughter would have lived or died if other choices had been made. 

 

I appreciate all sides of this issue. My old friend has run the AIDS clinic here for many years and has done so much to help those with HIV/AIDS. He and his staff disagree with the fact that we published the articles we did and we published his critical letter in the magazine. An old friend who grew up with my kids has AIDS now and has told us that he has gotten cancer from the medication, something that his doctor warned about and verifies. In the late nineties, a man in NYC who works with HIV wrote to me to tell me that universal HIV testing of pregnant women was going to start and he suggested that Mothering cover it. I had never felt that HIV/AIDS was something we would cover at Mothering before then. 

 

In looking into the issue I saw it as a human rights issue because I am sympathetic to the difficult choices a woman who tested positive to HIV would face, especially a naturally minded woman, especially a woman with no symptoms of illness. We also covered the story of Kathleen Tyson, a mom who fits this description and who tested positive to HIV during her pregnancy. She questioned the diagnosis as she had been monogamous for over a decade and had no signs of illness or risk factors. It was then that I learned, as has been discussed in this thread, that pregnancy and other things can contribute to a false positive. Therefore, women may have reason to question their diagnosis.

 

You're right WildKingdom, that AIDS has gone down and medications have improved. We published our articles in the late nineties at a time when there were more deaths from AIDS and the drugs therapies were in development. The CDC reports that death with HIV diagnosis increased from 1987 through 1994, plateaued in 1995, then decreased 33% per year from 1995 through 1998 and 5.5% per year from 1999 through 2009. Death rate declined by 13.3% from 2009 to 2010. The CDC estimates that 17,774 people died from AIDS in 2009.

 

Another reason why a woman like Kathleen Tyson has a good reason to question her diagnosis is that HIV occurs most predominantly among men who have sex with men (MSM). In the 2009 CDC estimates of new HIV cases, 61% occur among MSM.

 

Another thing that women, especially pregnant women, are rightly concerned about are the drugs. They may be effective, but they are not benign. In our article we reported that the rate of miscarriage and birth defects is increased for pregnant women taking the drugs. The Canadian Pharmaceutical Association cautioned about AZT in 1997: 

 

The long-term consequences of in-utero and infant exposure to zidovudine [AZT] are unknown. The long-term effects of early or short-term use of zidovudine in pregnant women are also unknown...The incidence of adverse reactions [to AZT] appears to increase with disease progression, and patients should be monitored carefully, especially as disease progression occurs. 

 

This is not to start an argument again, but simply to say that there are compelling arguments for taking the drugs and complying with the AIDS protocol and compelling arguments for an otherwise healthy pregnant woman with no symptoms to question them. 

 

 

Regarding Mothering's position. I'm really not comfortable with Mothering having any position other than supporting informed choice. But, as things have evolved online, the community and especially the moderators and administrators have not felt comfortable or had the time to host all conversations, especially pro-spanking, pro-crying-it-out, or pro-medical circumcision conversations. This can be problematic for new members who have come here to discuss their options and see some conversations apparently closed. The mods try to walk a fine line between holding to some standards for the existing community and welcoming new members who may be confused by these standards.

 

It reminds me of when I was a LLL Leader and one of the meeting themes was Weaning. I wanted to make pregnant moms feel welcome but also support the mom nursing an "older" baby. It's a dance between new and veteran community members and I appreciate those of you who are new and willing to ask, "What's up?" and those who have been here for a while and are willing to answer questions and help new members navigate and feel welcome.

 

I do think that the extreme positions and extreme posters are not the norm here. We have a large community with nearly 200,000 members. Over 2000 members are online everyday and nearly that amount join every month. We have a simple UA that asks people to be civil and respectful. We are in the process of re-writing our mission statement and will make that more accessible. 

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Maggiore rejected the coroner's conclusion, ascribing it to political bias and attacking the personal credibility of the senior coroner, James Ribe. Maggiore retained a board member of Alive & Well AIDS Alternatives, Mohammed Al-Bayati, to review the autopsy report. Al-Bayati holds a Ph.D. in comparative pathology (the pathology of animal diseases). He is not a medical doctor, nor is he board-certified in human pathology. He is the author of a book entitled Get All The Facts: HIV Does Not Cause AIDS. The coroner report- Eliza Jane had PCP pneumonia and HIV encephalitis (report no longer available online) Al-Bayati's report- http://www.justiceforej.com/Al-BayatiReport.pdf Analysis of Al-Bayati's report- http://www.rickross.com/reference/alive/alive4.pdf
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Maggiore rejected the coroner's conclusion, ascribing it to political bias and attacking the personal credibility of the senior coroner, James Ribe. Maggiore retained a board member of Alive & Well AIDS Alternatives, Mohammed Al-Bayati, to review the autopsy report. Al-Bayati holds a Ph.D. in comparative pathology (the pathology of animal diseases). He is not a medical doctor, nor is he board-certified in human pathology. He is the author of a book entitled Get All The Facts: HIV Does Not Cause AIDS. The coroner report- Eliza Jane had PCP pneumonia and HIV encephalitis (report no longer available online) Al-Bayati's report- http://www.justiceforej.com/Al-BayatiReport.pdf Analysis of Al-Bayati's report- http://www.rickross.com/reference/alive/alive4.pdf

Thanks for posting this. It's what I had read also but I couldn't remember where.

Regarding Christine Maggiore's death, I have no doubt that grief over the loss of her daughter could have contributed to her death. But the fact remains that she died of PCP pneumonia, a disease which is almost exclusively limited to those with immune system disorders. I respect her right to choose not to take drugs but exercising that right doesn't grant her immunity from the consequences. I assume when she chose not to take the drugs she considered the possibility of an opportunistic infection and decided the benefits outweighed the risks. And maybe (I hope) she still felt that way when she died. Certainly plenty of people choose not to proceed with cancer treatment knowing that it will most likely reduce their life expectancy and they are ok with that.

Mother of two spectacular girls, born mid-2010 and late 2012  mdcblog5.gif

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Eliza Jane Scofield didn't die in the 80s or early 90s when there was still a lot of confusion about what caused AIDS and how to treat it.  She was born in 2001 and died in 2005.  There was a scientific consensus about HIV and AIDS and a well-developed protocol for management of pediatric AIDS and HIV.  I worked with HIV+ 8-10 year-olds at a summer camp during 1996 and 1997.  They were active, healthy kids.  If you didn't know their files and med regimens, you wouldn't have picked them out of the crowd (you might have thought they were a couple years younger than they were - they tended to be short for their ages).  With treatment, Eliza Jane Scofield's prognosis would have been good. 

 

I respect parent choice about a lot of things.  However, some choices have predictable negative outcomes for children and reflect poor judgment and reasoning on the part of parents, and I feel strongly that supporting those choices is unethical.  We're not talking about formula vs. breast or raising a kid vegan or diapering philosophies here.  We're talking about a woman who was so deeply in denial about her child's medical condition that she not only refused treatment for that condition leading to the child's death at age 4, she then rejected the coroner's assessment of cause of death and turned to an AIDS-denying vet for a conclusion she liked better.  I know Maggiore's heart broke when her daughter died.  She wrote a pretty memorable article about it.  I have no doubt that this loss contributed to Maggiore's own death.  They might both be alive now had Maggiore not been misled by AIDS denialists. 

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"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.

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"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.

MDC has a fairly long history of questioning mainstream parental choice and mainstream health choice as they affect mothers and children.  I am not sure why AIDS/HIV should be exempt from this headscratch.gif

 

I also think people need to keep in mind when the Mothering articles on HIV/AIDs and pregnancy were written - it was the late 90's.  Mothers were being told they had HIV and in the next breath being told they had to go on AZT, which, according to a quick google search I just did, was quite the new protocal in the late 90's.   Had I been unfortunate enough to receive a HIV diagnosis in pregnancy in the 90's,  I doubt I would have been lining up to go on AZT. It is a strong drug, and at that point in time it was a largely untried drug.  It flies in the face of conventional wisdom which says to avoid drugs in pregnancy.  (Remember thalidomide?  There are good reasons to be cautious about drug use during pregnancy)

 

I am not an AIDS denialist (what a loaded and inflammatory term!), and if I were pregnant and diagnosed with AIDS right now, I would probably go on AZT, deliver by C-sec and not breastfeed.  I would research things a bit more, but if that protocol works, I would do it.  This is 2012, though, not 1998.

 

Comparing the coverage of HIV in pregnant women in the late 1990's (when protocol was brand new) to smoking - which has long been known to be bad, is not a fair comparison.  

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Kathy, AIDS denialists deny the existence of AIDS, or at least deny that it is cause by HIV. Why is it inflammatory to call them that?
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The protocol for azt in pregnancy wasn't brand new in the late 90s. The protocol for management of pediatric HIV was even less new. Either would have improved Eliza Jane's prognosis.
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Kathy, AIDS denialists deny the existence of AIDS, or at least deny that it is cause by HIV. Why is it inflammatory to call them that?

It is inflammatory to say writing articles  (back when all this information was somewhat new) that questioned breastfeeding with HIV/AIDS and AZT in pregnancy is the equivalent of denying AIDS.  

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People didn't say it did. People said that Peggy's involvement with Alive and Well (an organization that denies that HIV causes AIDS - they don't call themselves denialists, but "AIDS re-thinkers" eyesroll.gif ), especially in conjunction with the articles written about AZT (which, really? Not new information when it was written) lead people to believe that Mothering has an AIDS denialist stance.
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Who is addressing whom?  I think there are a number of different issues here.  First there is the issue of AIDS denialism.  Second is the judgement (in the present) about parenting choices that were made over a decade ago.  The third issue is (perpetually): "Where do we draw the moral line?"  And, fourth, where does Mothering stand.

 

1.  AIDS Denialism

 

Apparently AIDS denialism is a loosely defined (and highly rhetorical) term that is used to label AIDS dissenters of a number of different kinds.  Ones who don't even believe HIV exists are lumped in together with those who seek alternative medical advice or even those who are just too skeptical.  If you visit the Alive and Well website, the first statement you will read is this: "We present information that raises questions about the accuracy of HIV tests, the safety and effectiveness of AIDS drug treatments, and the validity of most common assumptions about HIV and AIDS. This material references a growing body of scientific, medical, and epidemiological data, and is designed to inspire much needed dialogue on these issues as well as assist people that want to make truly informed decisions about their lives and health."  What is so controversial about that?  If we don't ask the questions..............


And, in fact, there are some people who have HIV and, without any treatment, do NOT die...not yet, at least.  Apparently these are few and far between (but statistically worth noting/studying).  http://www.independent.co.uk/life-style/health-and-families/health-news/handful-of-20year-hiv-survivors-hold-key-to-discovering-vaccine-1645735.html  Also, there are some people who may possibly have developed an immunity through exposure http://jid.oxfordjournals.org/content/202/Supplement_3.toc  (caveat...I did not read any of this group of articles).  

 

So, let's just say we're looking to frame the Alive and Well (or Maggiore's own) argument.  The first premise might be to say that HIV does not necessarily cause AIDS.  What's so denialist about that?  It's true.  It's valid.

 

There is absolutely no way to prove that HIV causes AIDS...there's just a lot of information that says that HIV often leads to AIDS.  And...if some of those people who are living with HIV are not getting AIDS, there is certainly a reasonable question (even today) to ask why and how these untreated cases do not.  And so, to say that there is a possibility of living with HIV without getting AIDS is also correct.  We know so because there is evidence.  To say that there are possible other therapies is also very likely to be true--there is no indication that the therapies that we have currently are the only ones we will ever have and, in fact, the first article implies that medical experts are still studying HIV/AIDS in search of better treatments.  Can we not have an organization to raise questions about the safety and effectiveness of these new treatments or even their validity without calling them denialists?  If they were denying it altogether, they wouldn't have an organization.  

And what do people do when patients don't want to be treated with these drugs?  What recourse do they have?  Are all of them denialists, or just the ones who take it "too far".  And then how far is "too far"?  My girlfriend's uncle refused treatment for HIV five or six years ago...he no longer wanted to be ill all of the time (side effects of the medication).  He did end up dying of AIDS-related illness, but one of the last things he kept saying was that he just wanted to die with dignity.

 

Was he a denialist for denying treatment?  

 

 Sure, maybe there would be doctors today who might try to legislate against a mother who tried to do what Maggiore did...but that was then.  This is now.  They couldn't intervene without enough evidence and she couldn't believe for the same reason.
 

 

2.  Hindsight is 20/20

 

So, what was it like then?  

Originally Posted by stik View Post

Eliza Jane Scofield didn't die in the 80s or early 90s when there was still a lot of confusion about what caused AIDS and how to treat it.  She was born in 2001 and died in 2005.  There was a scientific consensus about HIV and AIDS and a well-developed protocol for management of pediatric AIDS and HIV.  I worked with HIV+ 8-10 year-olds at a summer camp during 1996 and 1997.  They were active, healthy kids.  If you didn't know their files and med regimens, you wouldn't have picked them out of the crowd (you might have thought they were a couple years younger than they were - they tended to be short for their ages).  With treatment, Eliza Jane Scofield's prognosis would have been good. 


Stik, I was just reading around the internet on an Rx website (looking for side effects of AZT) and I found a general timeline of the AIDS epidemic.  http://www.rxlist.com/aids_retrospective_slideshow/article.htm  When I got to "1998-2000" here is the small snippet they included in the slideshow: " Awareness grows that HAART has serious side effects.  Treatment failures underscore the need for newer, more powerful drugs.  In the ensuing years, the FDA approves new classes of drugs that make HIV treatment safer, easier, and more effective.  But the drugs still do not cure AIDS."  

 

So, when Maggiore was pregnant (at 45!) in 2001, these new HAART drugs (the "well-developed protocol") were under fire.  I know it's easy to say (today) what would have/could have/should have happened, but what she was doing at the time was watched so carefully because there were a whole host of people who wanted to know if she was right.  She had already successfully carried, birthed, and breastfed her first child four years earlier without medication, and was a living success story!   Her actions were infuriating to doctors (like WildKingdom) who might have known differently through their experience, but for the majority of mothers out there...too many questions were unanswered and the doctor's anecdotal stories of success were no stronger than Maggiore's own.  Lay people didn't see what the doctors saw, and mothers didn't want to lose their babies to a numerical probability.  How is a mother supposed to give her child potentially-harmful/lethal drugs when there aren't enough good answers for her?  How could someone test positive, then indeterminate, then positive, then negative, and not doubt the medical community?  Her stance--a position of doubt--was what was highlighted by Mothering (and thankfully, because this is now extraordinarily newsworthy and people have more information in light of her death).  Certainly people are more aware, doctors are more sensitive, and lay-people are still talking.     

Let's face it--even today, HIV/AIDS is still new.  We've really only known what was going on for 35 years or so, and the treatments we have are not perfected.  To put a child in harms way and to lose them to an experimental drug that was introduced just a few years before...who can say that they would have done better?  Sure we can say it today...but as soon as Maggiore's daughter died, all of our sentiments (and our arguments) changed.  And when Maggiore died, everything changed yet again.  And, even since their deaths, Alive and Well seems to have changed their arguments too.  This is only natural...in light of the evidence.  Still, they continue to challenge the industry.  They should.   


I keep trying to put myself in her shoes.  I keep thinking that I would have done differently, partially because I'm much more likely to follow medical advice than go against it and risk martyrdom.  But what would I have said to my doctors?  Would I have asked for them to give me proof that AZT or HAART would categorically NOT harm my fetus or child?  Would I have been skeptical of their diagnosis if I had received different test results?  Would I be afraid to die?  Would I be afraid to give my child these potentially life-saving drugs without canvassing every conspiracy theory?  What did those doctors say to her?  How did they explain her perfectly healthy son?  How did they treat her opinions?  I can't even begin to imagine all of the questions and feelings that ran through that poor mother's head and heart for four years of her pregnancy/life.  And then the guilt.  Would I have taken the drugs to save my life if I had not given them to my daughter?  Would I regret my decision?  What on earth would I do in the three years following her death...  I can't even imagine it.   

 

 

3.  Who crosses the line?

 

Originally Posted by stik View Post

I respect parent choice about a lot of things.  However, some choices have predictable negative outcomes for children and reflect poor judgment and reasoning on the part of parents, and I feel strongly that supporting those choices is unethical.  We're not talking about formula vs. breast or raising a kid vegan or diapering philosophies here.  We're talking about a woman who was so deeply in denial about her child's medical condition that she not only refused treatment for that condition leading to the child's death at age 4, she then rejected the coroner's assessment of cause of death and turned to an AIDS-denying vet for a conclusion she liked better.  I know Maggiore's heart broke when her daughter died.  She wrote a pretty memorable article about it.  I have no doubt that this loss contributed to Maggiore's own death.  They might both be alive now had Maggiore not been misled by AIDS denialists. 

 

I haven't been to the breast vs. bottle debates on these boards but I can tell you what my argument is in a few sentences.  Breastfeeding is normal; formula is medical intervention.  For those mothers who bottle feed because they have a medical condition--they require medical intervention.  This is unremarkable.  For those mothers, however, who simply don't want to breastfeed...that's a choice that has "predictable negative outcomes" (some statistical references here: http://www.llli.org/docs/Outcomes_of_breastfeeding_June_2007.pdf ).  Only through some fancy statistical calculations can you predict with accuracy the likelihood of any of these outcomes, but I'm sure we could put some mathematician on the job.  Similarly, calculations could have been made for Maggiore.  Those calculations might have involved the risks of a pregnancy at 45, the likelihood of developing AIDS while nursing and without taking medication while simultaneously factoring in the death risks (which were largely unknown) due to the teratogenic/lethal consequences of AZT and HAART treatment programs during pregnancy and beyond.  For someone who had lived for nearly 10 years without treatment and had already had a child who did not contract HIV through an unmedicated pregnancy, childbirth, and breastfeeding relationship, you would have to account for her qualitative experience also.    

As women, we continue to support the breast-vs.-formula debate as a social dilemma, which it probably is.  If we call it a "lifestyle" choice, what is to say that living-without-medication is a lifestyle that we could legislate any differently?  And then you get into medical interventions, such as abortion, which eliminate the possibility of a child's continued life...a drastic form of truncation.  Where does the line get drawn that we can and can't make some decisions and take some risks with our bodies and our children's bodies?  I don't think that Christine's daughter suffered much...that is the beautiful side to this story.  No medications, no people telling her that she had HIV and trying to explain to a little baby why they were constantly poking and testing and giving her things that made her feel sick.  How do we know she would have survived anyway?  And who is to say that a death by 1,000 falls is better than just one?  

 

This isn't to start ancillary debates on here--believe me...I'm sympathetic to anyone who cannot/did not choose to breastfeed, and I support women making choices about their bodies.  But I'm also sympathetic to someone who chooses to walk independently of medical treatments, to challenge medical and statistical evidence based on personal experience, and I can only imagine the world that Maggiore was living in at the time.  To say, today, that she was deeply in denial sounds simple.  To go back in time and try to say the same thing is much harder and more complex.  I have a deep belief that mothers do the best that they are able to and that no mother is willing to risk her child's life to carelessly prove a point.  I think, with one child who had already seemed to escape the odds, she figured she was doing something right.  I think she was doing the best she could in light of her personal evidence and with the significant doubts that there still were (still are) in the medical community regarding HIV treatments.  I think the evidence was scant about the risks to the fetus (she talks about the lack of evidence all over in interviews if you google her, and also in the Mothering article) and her fears that she would lose her baby if she followed protocol were well-founded.  There is evidence today that indicates that potential effects of AZT to pregnant mothers could result in resorption, spontaneous abortion or miscarriage.  


Who knows what she denied at the end of her life.  It is possible that she turned to denial after the death of her daughter in search of something that might appease her guilt and allow her to be a mother to her son.  Who knows what I would do in that case.  In her last days, we can only wonder what she was thinking.  Still, it looks as if her foundation continues to challenge the medical community in light of current evidence.  It is very likely that they will never receive credit for what place in society their argument supports, but without groups like Alive and Well and Mothering (and others), there would be no challenge to whatever the pharmaceutical companies decided to do.  That is a legacy that Maggiore and her daughter should be proud of.  

 

4.  What Mothering supports...

 

I'm only taking an educated guess, but I think that Peggy really supports a variety of advocacy groups that go against the medical community, not because she is a nihilist or because she thinks all doctors know nothing--I think both of those are straw-man conclusions that tend to be drawn in haste.  I think that Peggy supports these groups mainly because they advocate for the single individual (and especially a group of unified mothers who are often too busy with changing diapers to do the legwork themselves) should they be forced into having to comply with an intervention that they do not believe in.  And further many of these organizations encourage people/mothers to stand for these principles with the belief that, if they feel them strongly enough, they probably have some validity to their argument to back it up.  The process is to articulate the argument and work through it, assertion by assertion.    

 

Too often, I think people find the expression of this "devil's advocacy" to mean that people are not willing to accept what is widely held to be objective evidence.  Instead, what sifts out in the end is that there are a number of mothers who are intelligent enough to see and challenge the subjectivity of real humans deriving hypotheses and performing inductive scientific tests on them, understand the corruptibility of power (big pharma), and yearn to find a self-expression on some middle ground which accounts for their own qualitative experiences and perhaps a less-materialistic vision.  

And if that is not satisfactory to those who are entirely materialists, Peggy is not Mothering.  Mothers are mothering.  If she supports Alive and Well, that is certainly her prerogative.  But her prerogative is not the voice of all mothers.  I believe she created Mothering to be that unified voice.

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#78 of 120 Old 07-11-2012, 08:34 AM
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We don't know if or how much Eliza Jane Scofield suffered. She died of pneumonia, which is an uncomfortable and terrifying disease for a child to have.

There are a lot of beautiful things in the world, but four-year-olds dieing of pneumonia aren't among them. I wish a painless death for the dieing for those who choose that path. Pneumonia isn't painless. Eliza Jane Scofield didn't choose, and didn't have to die.
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We don't know if or how much Eliza Jane Scofield suffered. She died of pneumonia, which is an uncomfortable and terrifying disease for a child to have.
There are a lot of beautiful things in the world, but four-year-olds dieing of pneumonia aren't among them. I wish a painless death for the dieing for those who choose that path. Pneumonia isn't painless. Eliza Jane Scofield didn't choose, and didn't have to die.

 


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.

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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 a happy child as documented  

 

 

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

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I just...

I'm speechless. I truly am.
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#82 of 120 Old 07-11-2012, 11:20 AM
 
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"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.
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#83 of 120 Old 07-11-2012, 11:46 AM
 
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D for Denial.

 

 

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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.

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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.
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#85 of 120 Old 07-11-2012, 01:23 PM
 
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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.  
 

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oh my god. I can't even. . .irked.gif
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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. 

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#88 of 120 Old 07-11-2012, 01:38 PM
 
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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? 

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#89 of 120 Old 07-11-2012, 01:47 PM
 
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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.  

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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...

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