Friday, May 20, 2011

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 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.

Tuesday, May 3, 2011

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……