The Case of Eliza Jane, Part 2

After the death of her three-year-old daughter, Christine Maggiore claimed that Eliza Jane was being used as a "crucible" in the war between AIDS dissidents and dogmatists.   Still the question remained.

Was Christine Maggiore In Denial?



Christine Maggiore did, in fact, deny outright the causative link between HIV and AIDS, as do most of the so-called AIDS dissidents.  Certainly this is a literal form of denial.

But to be “in denial” suggests something else, something insidious, psychologically deficient. Or, as one dictionary defines it, a state of mind marked by a refusal or an inability to recognize and deal with a serious personal problem.

This did not describe Christine.

When she first tested positive for HIV, she accepted the death sentence she believed she had been handed without question. She told me, “it washed over me like rancid water, this sense of shame, that I had done something wrong and I was now this dirty person”.  

But she put the shame aside and dove in head first, becoming a public speaker on HIV prevention. It was only later, when she actually had questions, that she began to ask them. Loudly.  And when she couldn’t find answers in the mainstream medical community she looked for them elsewhere, becoming one of the most prolific members of the so-called AIDS dissident movement.

Yes, Christine challenged “well-accepted” theories about AIDS. Many of the greatest scientific advances in history are premised on challenges to existing, well-accepted theories. One may turn out to be right, wrong, brilliant or misguided, but questioning conventional wisdom does not constitute being in denial.

Yes, her point of view was controversial. But not all of her ideas were as “fringe” as one might expect: there were documented cases of false positives and reports of exaggerated AIDS statistics from around the globe. Treatment side effects –short and long term - were often debilitating, difficult to manage or simply unknown. They still are for many.

Yes, for better or worse, AIDS had become a profit-driven industry helmed by pharmaceutical giants (who, by the way, also own most of the infant formula companies and HIV testing kit patents). The wisdom of creating public health policy around studies paid for by Big Pharma has long been debated in the medical community. It is not simply the crazy talk of conspiracy theorists.

And let’s not forget that Christine’s foray into AIDS “denialism” only happened after she retested repeatedly and got different results each time. Who wouldn’t be skeptical?? That experience, coupled with her persistently good health for many years, led her to view AIDS research as dogmatic and flawed – a view based on experience and research, not fear or incompetence.

The trouble is that despite her tireless efforts to have an open dialogue with experts who were unwilling to invite her to the table, Christine began to develop her own strain of dogmatism.

Over the years she refuted nearly every point made by AIDS “mainstreamers” no matter what they said.  Concessions were made in the medical literature regarding treatments, testing and breastfeeding while HIV+.  Research evolved. Guidelines changed. But year after year Christine remained staunch in her belief that the entire HIV/AIDS paradigm – and all of its tenets- was categorically wrong.

Maybe this unwavering resolve becomes necessary when one holds a point of view that is so controversial, so fundamentally divisive. A line is drawn and you must jump to one side or the other and stay there, firmly planted. Us versus Them.

Does this mean Christine was in denial?

I don’t think she was.  But I keep coming back to that night at the hospital, when her daughter Eliza Jane was dying.  ( http://this-child-of-mine.blogspot.com/2011/06/case-of-eliza-jane.html)   As a parent I cannot imagine the fear, the horror, the desperation Christine and Robin must have felt in those final wrenching hours, surrounded by doctors who, in the end, were unable to save their daughter’s life. And yet, there was one crucial fact that Christine later shared with me that I simply could not understand.

Christine did not tell the doctors that she was HIV+. 

When I asked Christine about this some months later, she responded that “she had answered all of the doctors’ questions truthfully”. They had never asked about her HIV status, and she didn’t want to offer that information because her 14+ years of being “in and around this issue” had shown her how “prejudice drives medical diagnostics.”

Five years earlier, when I first began interviewing Christine, this might have made have made some sort of logical sense to me. Now, with two children of my own, it really didn’t answer the question at all.

Why?  

Knowing that your child is about to die, wouldn’t you say anything, do anything, risk anything if there was a shadow of hope that it might help?

Knowing Christine as I did, I know that she would literally walk through fire, or, in her own words, swim through shark infested waters for the sake of her children. Yes, she would do anything. This wasn’t a matter of pride, politics or narcissism, as others have charged. Nor do I think anyone really believes that her sharing that information that night would have suddenly saved EJ's life.

Still, Christine’s decision to keep her HIV status from the doctors, and later the coroner, suggested to me the extent to which her convictions - once rational, researched-based, validated by experience and empiricism - had transformed into something approaching religion. 

It was no longer just a dissident point of view, the ambiguous gray area of AIDS research that demanded attention. It had become a single-minded belief system, held together in the end by faith, in a way that made it impossible for Christine to acknowledge or merely consider another possible truth in the tragedy before her.   

Or even ask the question.

The Case of Eliza Jane, Part 1

In my previous post I wrote that the critics of former AIDS dissident, Christine Maggiore, claimed she was potentially causing the deaths of countless children.  The war came home in the most devastating way possible when Christine's own daughter, Eliza Jane, died at three years old. 

In this two-part article I'll take a closer look at the case of EJ, and share my own experiences in documenting this tragedy and its aftermath.

PART 1: Eliza Jane's Story

 

After the death of her daughter, Christine Maggiore, a vocal activist in the AIDS dissident movement, was called everything from a child murderer to denialist bitch, and, yes, Andrea Yates. 

Bloggers raged that “she had killed her daughter as surely if she had put a gun to her head”.  One sadistic idiot got hold of a picture of Eliza Jane, blacked out her eyes, and posted it to the web with the caption, "See you in Hell, Mommy!"  Another playful quipped, “I'd ask if I'm a horrible person for laughing my ass off when I read this….”  

(Yes, you are.)

Christine accused her anonymous hecklers of using her daughter as a "crucible" in the war between AIDS dissidents and dogmatists.  Nevertheless, the question remained. Was Christine Maggiore in denial about HIV? Did her daughter die because of it?

Amoxicillin or AIDS?

In 2005, Christine Maggiore and Robin Scovill’s three-year-old daughter, Eliza Jane, developed an ear infection. They gave her Amoxicillin, a common antibiotic. Almost immediately EJ began throwing up and experienced trouble breathing. Her condition worsened throughout the day and that night.  EJ was rushed to the hospital.

Christine told me that that at the hospital ER doctors asked her and Robin a series of questions that might help them explain why an otherwise healthy three-year-old child was dying.

The questions ranged from what chemicals and medicines they had at home, to who had access to EJ, exotic pets, The doctors performed various blood tests, chest scans, and x-rays.  They didn't ask Christine if she was HIV+, and Christine didn't tell them that she was. Four hours after arriving at the hospital, Eliza Jane died.  And Christine and Robin still had no answers. 

They didn't get any until months later, Christine recalled, when someone “tipped off” the Los Angeles coroner’s department as to who she was.  At that point,  Robin said, “a light bulb when off in their heads.”  New tests were performed and the official cause of death determined: Pneumocystis Carinii Pneumonia, or PCP.

An AIDS-defining condition.

Fallout

The coroner’s report was released to the media before the Christine and Robin had even received a copy. The Los Angeles Times published the front page article, “A Mother’s Denial, A Daughter’s Death” (http://articles.latimes.com/2005/sep/24/local/me-eliza24),  and almost overnight Christine went from grieving mother to villainous AIDS denialist who had gotten what she deserved. 

Christine and Robin were investigated for negligent homicide. Detectives interviewed their friends, neighbors, their pediatricians, and teachers at their son, Charlie’s, school. Fearing that they might lose custody of Charlie, Christine and Robin proactively tested him (and Robin) repeatedly for HIV. All tests came back negative. 

The homicide case was eventually dropped when investigators believed that it would be difficult to prove medical negligence since Christine and Robin clearly had sought regular medical advice from numerous doctors for both of their children since birth.  

Meanwhile Christine and Robin pursued their own theory that it was a fatal reaction to the antibiotic that had taken Eliza Jane's life, not AIDS.  During one of our last interviews, they tried to describe to me what day to day life was like in these darkest of moments:

Robin: Losing EJ…there’s a – it’s like a bomb dropped in the middle of our family---

Christine: --and it goes off every day. It just doesn’t stop.

Robin: There’s no chance to even clean it up right now. We’re just sort of dealing with our ringing ears and the debris of that. And there’s just a hole. That I can’t imagine will ever be filled again.

There was no time to grieve. No time to sit quietly and remember the daughter they had lost. Only a fight that was long from over. 

Coming up in Part 2: Was Christine Maggiore in denial about HIV? 

Families Underground

                  

If you didn’t know better, the idea of parents seeking medical freedom having to “go underground” may sound, well, paranoid. 


But during interviews for the documentary, This Child of Mine, HIV+ mother and AIDS activist, Christine Maggiore, remembered meeting dozens of parents who were in danger of losing custody of their children simply for being skeptical.

She told me about one mother who had sought out a second opinion about HIV treatment for her child when the drugs had made him ill.  Shortly after, at 10:30 at night, seven police officers arrived on her doorstep. They took the boy from his home and placed him in foster care.

In many of these cases Christine helped parents find legal defense, expert witnesses to testify at hearings, and in a few cases, a place to hide out when custody was at stake. She often advised parents to refuse HIV testing, change doctors, move. Her critics – and she had a lot of them – claimed she was in complete and total denial about her own HIV diagnosis, potentially responsible for the deaths of countless children whose parents had been misled by her kindly quackery. Her fans – there were a lot of those too – believed she had saved their kids’ lives.

Christine’s Story

Christine Maggiore was diagnosed HIV+ in 1992. Rather than lying down, waiting to die, Christine became an activist. She was a volunteer and public speaker for AIDS Project Los Angeles, LA Shanti Foundation, and Women at Risk, where she was a founding board member.

Several years into her diagnosis a doctor suggested she re-test. The results were inconclusive leading Christine to do her own research. She discovered the AIDS “dissidents”, a loosely connected network of scientists, doctors, and citizens from around the world who do not believe that HIV is the cause of AIDS.  Christine went on to write a book, What if Everything You Thought You Knew About AIDS Was Wrong? in which she  criticized the HIV/AIDS paradigm, the use of unreliable tests, and the efficacy and safety of treatments.

She also went on to get married and have children. She and her husband, Robin, chose not to have their children tested for HIV because “testing them can only confirm or contradict what we already know: our kids are perfectly healthy. So testing them is a bit of a roll of the dice that would lead to nothing but pain, heartache, problems, our house being sold and us on the run.”  Christine knew this - she had seen it happen many times. 

Paranoid or Prepared?

While I was making my documentary, Christine put me in touch with many families who had rejected medical recommendations for HIV and got into some seriously hot water. Not all of them appear in the movie, but I remember them well. Their stories are hard to forget. 

There was Sophie Brassard, a Montreal mother who lost custody of her children after stopping their treatment. Sophie “kidnapped” her children and fled to Morocco where she hid out for two years until her own failing health forced her to return to Canada. She used to email me as "Trixie" with "on the beach" in the subject line.  She used this code just in case someone was monitoring my email. Or hers. I'm not sure. But she was scared. 

I met “Diana”, an HIV+ mother who was stopped by police and taken to a grocery store to buy formula when doctors were concerned that she planned to breastfeed and turned her in. Her story was surreally comical, like a scene from Brazil, or Monty Python.

I met David and Kathleen Tyson who were turned into DHS for choosing to breast feed their newborn son.  Kathleen had tested HIV+ during her seventh of month of pregnancy.  After seeing security guards posted at Kathleen's room in the maternity ward, David, in a moment of panic, considered tying bed sheets together to climb down to the street with his family and flee. Four days later they lost legal custody of their son. 

I met Valerie Emerson who wound up in court fighting the state of Maine for custody of her son when she didn’t want to enroll him in a drug trial for aggressive HIV treatment. Two weeks before the hearing she had already packed suitcases for her family, just in case.

And I met Christine Maggiore, HIV+,  who was anonymously reported to Child Protective Services for breastfeeding her son, Charlie. 

In the documentary, Christine recalls that in forty-five minutes before the social worker’s arrival, she and Robin made a quick exit plan that they would execute “upon a certain signal” if necessary.  Following the visit from CPS, we see Christine’s panic escalate as she desperately reaches out to friends in far away places that could hide her family if the investigation goes further.

A Thick, Black Line in the Sand

It would be easy to say that parents should have the unconditional right to make choices for their children. That doctors are arrogant. That social workers are too overwrought with caseloads to make careful, thoughtful decisions.  It would be easy, perhaps, if the story ended with parents getting their day in court and going home victorious, children in tow. Often this happened. But the story didn’t always stop there.

During the time that I made this movie at least four of the people I interviewed died, reportedly of AIDS related conditions. Two of them were children. One of them was Christine. Another was her daughter.  Some might nod their heads smugly and say these parents – especially Christine- got what they deserved.  In fact a lot of people did say that and much, much worse.

But before you jump on one side or the other, look closer. 

Right or wrong about AIDS, Christine’s fight for families, including her own, illustrates a deep division between parents and doctors that continues to widen across a vast terrain, extending far beyond AIDS borders.  When doctors feel a child’s life is in danger they must intervene. With their actions they bring years of study, clinical practice, and experience. 

But when parents feel bullied within a system that fails to address their concerns they may draw their own line, and, like Christine once said, simply walk away. It seems to me that there should be - there must be - a middle ground on this terrain. A neutral place where parents can express concern and make decisions, doctors can provide care, and children can stay safe in their homes. Families together. Above ground.

What’s your story?

Have you ever disagreed with your doctor regarding your child’s care? Or are you a doctor who disagreed with your patient's choice? How did you handle it? Please respond here or email me privately at mychildmychoice@gmail.com. Or just share your thoughts. I welcome controversy and I don’t delete comments. 

Coming up next:  Some thoughts on Denial in the story of EJ.

Pro-Life for Baby Joseph

Do hospitals have the right to remove a child's life-support against the family’s wishes? 

15-month-old Joseph Maraachli suffers from Leigh’s disease, a rare but fatal neurodegenerative disorder. Back in October his doctors concluded that that he was in a vegetative state from which he would never recover. Consequently, the government-run hospital in Canada where Joseph had spent most of his short life handed his parents an oxymoronic order to consent  to remove his life support. Joseph’s parents requested that the hospital perform a tracheotomy instead so that he could breathe on his own long enough for them to bring their son home to die.

The hospital refused, stating that a tracheotomy was indicated only for patients who needed it for long-term care. Joseph didn’t. So they wouldn’t. As if trying to provide your child with a dignified way to die isn’t bad enough, now you have to go to court to do it.  But the Ontario Superior Court, too, rejected the family’s appeal.

Enter Priests for Life, a Catholic group that funded Joseph’s trip to a hospital in St. Louis, Missouri where he finally got his tracheotomy. In April, Joseph returned home to Canada with his family. They, along with their 15,000+ Save Baby Joseph Facebook friends are all praying for a miracle. Meanwhile, the Christian Broadcast Network has hailed Joseph’s plight as a “Pro-life victory”. Capital P.

Well, maybe it is, and maybe it isn’t.  I’ll give credit where credit is due but mere moments after the hospital’s decision came down, Joseph became a crucible for another agenda: the case against ObamaCare.

AHA!,  roared the critics with palpable glee. THIS is what you’ll get with a government-run health care plan. No choice, no freedom of health care! Hmmm. So, using this logic, can I assume that the current “freedom-based” private healthcare system would consent to an arguably futile, expensive procedure like the one Joseph got?

Well, okay, maybe not.  But with ObamaCare, get ready for death panels like the one that wanted to pull the plug on that poor baby.

But wait a minute, haven’t you heard the good news?? If you’re on life-support and you live in Texas you don’t even need a universal health care plan to set up a death panel ‘cause they already have a law for that.

Yup. The Futile Care Health Law, as it’s politely named in Texas, basically states that a hospital, in consultation with an Ethics Committee, can opt to discontinue life support when a patient is in an irreversible vegetative state.

Oh. So that’s what this is about? Ethics?

But hang on, it gets better. If the family objects, they get ten days to find another hospital. Now that’s ethical. Although, most states mandate longer notice for apartment evictions. And the best part of all?  This bill was signed into law in 1999 not by President Obama or some hippie-freak politician on the fast track to socialism, but  by one good-ole-boy-cum-Governor, George W. Bush. And other states now have similar laws but without the creepy deadline.

Look, I’m not trying to make a case for ObamaCare. But I do find it chilling that this family’s tragedy can be used so disingenuously, so sloppily, for a political agenda.  Would ObamaCare kill baby Joseph? No. Leigh’s Disease will. If his parents had insisted that the hospital keep Joseph alive indefinitely, at any cost- financial or ethical, that might have been different. But they didn’t. They accepted his imminent death; they just wanted it happen in the quiet comfort and grace of his own home.  

Ranting aside, it’s easy to espouse platitudes about the dangers of putting price tags on human lives. Someone still has to pay for it, and health care plans – government or private  - are universally dispassionate in making expensive decisions.  And nobody wants say it’s okay and even necessary to let a child die even when all efforts to support life will most certainly fail. Nevertheless, in my own pro-life way, I believe that even dying people should be able to choose quality of life and death, no matter the quantity. 

What do you think? Should the hospital have granted the Maraachli family’s request? Was it the ethical responsibility of the hospital to do so despite the clear futility of such a procedure in prolonging his life?  Please post your thoughts……

Superhero Island

The other day my husband, Casey, asked me how old our  eight-year-old son had to be to send him to Albertsons for some fried chicken and a quart of motor oil.  He was kidding of course. 

Sort of.

We’re within easy walking distance from Albertsons. We’re in a fairly urban but family-friendly “hipster” community. “What are the odds that he’ll get snatched up?” he asked.  “The real odds, not the trumped up odds we get from too much 'Law and Order'?”  

But it was a joke. Christ, we’d never do that. People would talk.

As  parents, we spend a ridiculous amount of time second-guessing the decisions we make for our children, from what kind cereal to feed them in the morning, to what kind of bike helmet to buy them, to what vaccines to give them. Schools, spanking, video games, potty training, car seats, booster seats, front seats. What happened to the days when you could just toss your kids in the back of your rusty pick-up -no seat at all - and head to the beach? (Calm down. I'm not advocating this. I'm just sayin'....)

So Casey and I have decided to move to a deserted island. We plan to raise our kids as superheroes, hone their unique powers, and drop 'em off in Times Square when they're 18 just to see if they've fared any worse for not being shielded from disaster at every turn. We'll send postcards from time to time to let you know how things are going. In the meantime, could you do me a favor?  

Take 1 minute to think about any decision you've ever made for your kid that you're pretty sure you made out of duress. Feel free to list more than one if, like me, you second-guess every decision. 

Thanks. And stay posted for news from the Island. 

Jennifer