I’m HIV+ : Can I Breastfeed?

The answer to this may depend more on where you live than how safe it is. 


In a recent podcast with How Positive Are You, Marian Tompson, a co-founder of La Leche League International, talks about her long-time search for answers to questions about breastfeeding and HIV.

Marian remembers back in 1997 when the World Health Organization (WHO) published its recommendation that HIV+ women should not breastfeed. Period.  Marian questioned the science behind these recommendations and began the online chat group, Another Look, to examine current research on HIV and breastfeeding. She invited doctors, nurses, and policy-makers from both sides of the issue to participate in the discussion “because I felt that we really needed to listen to each other.”  

I interviewed Marian while doing research for This Child of Mine in 2000.   Back then, one of her biggest concerns was that the lack of compelling evidence that breastfeeding while HIV+ was dangerous. In fact at least one study showed that among mothers who exclusively breastfed, there was no higher risk of HIV transmission than among mothers who formula fed. 

Someone must have been listening. In 2010, after a series of new studies that demonstrated strong evidence of positive health outcomes for breastfed HIV-exposed babies, WHO and UNAIDS reversed their earlier recommendations.  Now mothers are advised to exclusively breastfeed for six months in conjunction with antiretroviral treatment (ARV) for themselves and their babies.

The catch is that, in reality, this recommendation only applies to women living in resource-poor countries where formula feeding can be a death sentence because of the lack of access to clean water, and the long-term sustainability and cost of formula feeding. In most countries, while there are no laws prohibiting HIV+ mothers from breastfeeding, choosing to do so can result in a mother losing custody of her child. Marian refers to a recent study of mother-baby AIDS clinics in Chicago where nurses were asked in a questionnaire what to do if an HIV+ mother said she wanted to breastfeed. The unanimous response? Time to call the lawyers. 

In the podcast Marian talks about a few cases where this has happened, including the 1999 case of Kathleen Tyson, one of the mothers in This Child of Mine. In fact, Marian says that for a long time La Leche League counselors were afraid that supporting HIV+ mothers who wanted to breastfeed could land them in jail, and passed all calls of this nature on to Marian.  


She points out that even now, over ten years later, with new research and guidelines,  there are still very few resources for HIV+ moms who want to do something differently than they’re told. Many end up lying to their doctors, their neighbors, their friends -even going underground   to do so.

Why am I a better parent when my kids are asleep?

For the past few months I have been leading a fairly erratic double life of substitute teacher by day, dance studio employee by night. (No, I don’t dance. I’m not nearly that cool.)  And lately I miss the days when my husband was at work until 7 or 8 and I was home with the kids, making fish sticks, hearing about handball bullies at school, drawing the lollipop card in Candy Land.

Until the occasional nights when I am actually home doing those things.

I know I should be pleased that the no-homework policy at my son’s school affords us more quality family time. But let’s face it: we don’t play chess, and Jack just got a new IPod Touch for which we can’t seem to hammer out acceptable terms. So family time derails quickly into the familiar:  

“Five more minutes?” 

“No, now."

 “But I’m almost done with this level.” 

“Turn it off now.” 

“But—"

“NOW!”

 We can go for hours on that conversation alone.  So much for quality.

Or there’s my four-year-old daughter whose new favorite game is Neighbor Picnic. Emma spreads a blanket, takes out every pink plastic spoon, fork and dish from her picnic arsenal, and we begin the game on her signal. 

First we double-kiss, Real Housewives style, and she offers me lobster, cookies and miso soup. Sometimes she brings her baby, Sparkle Starfish, for me to rock to sleep while we talk about her job at the pickle factory. I know what you’re thinking. And yes, the first 600 times we played it was super cute. But now, a few rounds of neighbor picnic and I start drumming up excuses to check my computer every 12 seconds, for example, to see if it’s going to rain. You know, in case we’re planning a picnic. She nods knowingly and I feel like a jerk.

Then it’s 14 reminders to brush teeth, and, no you can’t wear your toy pumps and angel wings to bed,  who taught you the word idiot, Halloween is O-V-E-R, don’t point the nerf gun at your sister, and my favorite, this apartment is TOO SMALL for Baby Knight (suffice to say that Baby Knight involves hiding, chasing, lunging  squealing, and eventually tears.)  By lights out (although they fall asleep with the lights on) I’m literally giddy. I know, I suck, but I’m giddy. For about five solid minutes.

Don’t know if it’s all that rich lobster or the emotional toll of being outwitted by angry birds at every obstacle, but these kids crash hard and fast. All’s quiet on the western front and in all that silence I miss them. Every night I come back in the room to shut off the light and watch them sleep. Wait on the edge of the bed for one of those tiny sleep sighs to escape in the darkness. Then I think if I had five more minutes I’d happily read one more book. Go over that student council speech one more time. Join forces with Baby Knight, pick up a nerf gun and fire away at invading dragons. Because tomorrow night I’ll be back at the dance studio. Shortly after that, they’ll be off on real picnics. And they won’t invite me to tag along.  

Someday I’ll learn.

Teens on Gardasil: What do they think?

I recently posted some articles about Governor Brown’s new law that will allow children as young as 12 to receive the Gardasil vaccine without their parents’ knowledge or consent.

In case you’re just hearing about the newest vaccine debate, here’s some info about Gardasil from the website to get you started:

GARDASIL is the only HPV vaccine that helps protect against 4 types of HPV. In girls and young women ages 9 to 26, GARDASIL helps protect against 2 types of HPV that cause about 75% of cervical cancer cases, and 2 more types that cause 90% of genital warts cases. In boys and young men ages 9 to 26, GARDASIL helps protect against 90% of genital warts cases.

GARDASIL also helps protect girls and young women ages 9 to 26

against 70% of vaginal cancer cases and up to 50% of vulvar cancer cases.

So why wouldn’t parents want their kids getting this vaccine?

Some parents are concerned about side effects.  Others fear that vaccinating children against STDs will give kids a green light to jump in the sack. Jerry Brown’s law, which takes effect in January, 2012, simply removes parents’ from the equation. Problem solved.

But noticeably missing from all the noise are the voices of those most affected by the whole debate: the kids. If we’re going to plop this responsibility in their laps, it seems fitting that we hear what they have to say about it.

So I asked around.

Let me preface by saying, there is no particular research design here. The 40 or 50 kids I surveyed ranged in age from 14-19 and reside in Los Angeles county.  I explained the law, briefly explained what Gardasil was – a striking number of them had never heard of it – and described the concerns on both sides of the issue.  The quoted answers below represent the most common responses I received. 

Here’s what they said:

What do you think of the law?
“If the child wants to take that risk, I think it’s okay but the child should be informed, given all the information so that they would be smarter on the decision they are going to make.” “Nobody should be denied vaccines for any reason.” “Actually [Gardasil] should just be mandated like other vaccines you need for school.”	"It’s wrong because [Governor Brown] should at least talk to the parents or have them vote.” “This law may expand for other medical uses.” "This is not okay. It sounds like [the law] was done out of a whim or something.”

Are kids old enough to make this decision?
“As teenagers we know what we are doing.” “any [kid] can be educated about this if their doctor is willing.” “When you feel that it’s your responsibility you rise to the occasion”. “Every kid should have the right [to make the decision]. Because it’s their responsibility and their own body.”	"12 year olds are  are still young and don’t know what they are doing. I mean at least the kids should be a little older, like 15  or 16,  so they can actually think more carefully for themselves." “[Kids] are more interested in playing and are not going to be able to make a serious decision." “If kids are able to get their own medicine, they should be responsible to do anything.”
What about the parents?
“Some parents are worried about side effects. But what’s worse, a few side effects or cancer?” “A lot of parents are uninformed or even ignorant. Look at the whole autism debate.”	“Kids can take this vaccine behind the parents back and if something goes wrong it’s the parents’ responsibility and nobody wins except for the drug company [who]  wins your money.” "Parents care and they know what’s good and bad for kids. "If the kids are making decisions like that, what are parents for?”

The Case of the Tysons: How Did We Get Here? (Part 2)

It’s hard to imagine that something as natural and life-giving as breastfeeding could be considered criminal. And yet, in some cases, it is.

David and Kathleen Tyson were shocked to discover that Kathleen was HIV+ when she was seven-months pregnant with her 2nd child. She had no risk factors. She was extraordinarily healthy. She ran marathons. She ate organic food. She didn't use drugs. Her husband and 10-year-old daughter both tested negative.  This is the story of their fight to make their own medical choices, and how it cost them legal custody of their newborn son. 

On December 7th, 1998, Kathleen Tyson went into labor. Her husband, David, rushed her to Sacred Heart hospital where doctors advised her to take AZT during labor and delivery to stop transmission of HIV. Kathleen refused all treatments. Kathleen had a C-section, as is recommended for HIV+ mothers. Felix was born at 9:55 PM that night.

Kathleen and David had decided to skip the recommended AZT treatments for Felix because of their concerns about unknown long-term side effects. Kathleen had also decided to breastfeed Felix, despite the additional risk of transmission, generally estimated to be around 14%.

Kathleen describes those first hours of Felix’s life as “blissful”. But around 2:00 the next day, an infectious diseases pediatrician visited her in her room and “counseled” her strongly against breastfeeding. The doctor also urged Kathleen to begin AZT treatments for Felix. In the film Kathleen explains that she had based her decisions on her research, and “on my health and on the health of our other child and my husband David because they are all fine, we're all fine. I didn't  see a risk there.”

The hospital did see a risk - apparently a substantial one - and contacted Child Protective Services. Terrified now, Kathleen called the nurses in to ask for formula and bottles. Despite this, a few days later, the State of Oregon officially removed legal custody of Felix from the Tysons. David and Kathleen were charged with Intent to Harm. 

Four months later, the Lane County Circuit court ruled at the hearing that Kathleen and David could keep Felix at home but legal custody would remain with the State of Oregon. Kathleen could not breastfeed (nor feed him any of the milk she had stored). The state also held the right to routinely test Felix for HIV and make subsequent medical decisions for him. 

Kathleen and David’s case raised important questions about HIV and breastfeeding, both clinical and ethical.  But the biggest question people seem to ask?

 Why would a mother take the risk in the first place?

When you have a safe option that essentially eliminates risk of HIV transmission versus on that does not, why not just give your baby a bottle and be done with it?

But you have to understand that Kathleen did not think she was sick. No, this wasn’t denial. It simply didn’t add up. Clinically she was fine. She hadn’t passed HIV on to her husband, despite the fact that sex is considered to be a much more effective transportation system than breastfeeding, And she had breastfed her ten-year-old daughter for 3 years.   Three years. Still no HIV transmission.  So why now?

Kathleen had done some research on cross-reactions on HIV tests leading to false positives, and discovered that, though uncommon, it does happen. She had had some mild exposure to an infectious disease in Guatemala back in the 80s. She had had an inoculation for hepatitis B. She had had a prior pregnancy.  According to her research, all of these, on their own or in combination, can cause a false positive.

Bottom line, Kathleen considered her diagnosis to be wrong and therefore irrelevant. Thus breastfeeding did not pose a risk. And, on the flip side, formula feeding did pose significant health risks, all of which are well-documented.

I’m not saying that Kathleen made the right decision. I’m not saying that she didn’t.  If it were me, I’d probably follow the doctor’s orders because I tend to be wishy-washy and obey authority. Then again, I have been blessed with the luck of good health thus far for both of my children. Faced with making major life and death decisions in the breath of a moment, it’s hard to say what I’d do.

Which is really my point.  It may be easy to hear Kathleen’s story and think she’s crazy for taking such risks with her own child, but you don’t know until it happens to you. Crazy can mean giving your child toxic medication when there’s a strong likelihood that he’s not even sick. Crazy can mean needlessly depriving your baby of a lifetime supply of protection from all sorts of diseases and problems.  By the way, have you heard that exclusive breastfeeding has been shown to have NO greater risk of transmission than formula feeding? Back in 1999, that might have sounded crazy too. But it turns out there’s some pretty good evidence that it’s true. 

Stay tuned for more on that next time.

And coming up later in the month: An Interview with Kathleen Tyson today. 

The Case of the Tysons: How Did We Get Here?

Imagine finding out you are pregnant with your second child. You take some routine prenatal tests and discover that you are HIV+ positive.

Suddenly your world turns upside down.

You are told you must begin treatment immediately to prevent passing the virus on to your child.

The very next day you begin to experience nausea, fatigue, diarrhea. You worry. Will these drugs hurt my baby?

Your questions and fears are summarily deflected by the chanting of global statistics and risk-benefit factors.  Like a drum that keeps the beat of your rising panic.

None if it makes sense.

You live in a small town with your family. You run marathons. Eat organic. You never did drugs. Or were promiscuous. In fact, you and your husband have been together for over decade.

You go to a support group, because that’s what people like you are supposed to do.

(People like you. People who are going to die of AIDS. People who are not going to see their children grow up.)

You tell the folks at the group your story.  Does your husband have it? You tell them he hasn’t been tested. Heavy sighs. Rueful glances. They’ve seen this before.

So your husband gets tested.

He’s negative. So is your ten-year-old daughter. Whom you breastfed for 3 years.

None of this makes sense.

Your uncomplicated pregnancy becomes a surreal schedule of scans, tests, and anonymous specialists. They politely revolve in and out of your life to that drumbeat, getting louder now.

You do your own research and discover others that have the same questions as you.  You decide to stop the drugs and you feel better. Your doctors don’t agree with your choice, but what can they do?

You son is born and he’s beautiful. You tell the doctors you don’t want to put him on the meds. You say out loud that you plan to breastfeed.  This is a mistake.

The nurse tells the doctor. The doctor tells the hospital attorney. A rash of phone calls are exchanged. A petitioner from the court arrives. Armed guards stand outside of your room in the maternity ward.

Within 24 hours your son, less than a day old, is removed from your legal custody.

You wonder in terror, how did I get here? And then your nightmare begins. 


Coming up next: The story of David and Kathleen Tyson as they fought the state of Oregon for the right to make their own decisions for their newborn son. 

Our New Home

This Child of Mine gets a new web address:

http://www.familieswithhivmovie.blogspot.com/


Pass it on.......

And in other news:

Over the next few months we'll be examining the topic breastfeeding and HIV. Please pass along any great links and articles, or share your own experiences with this issue.

An Interview with David Crowe and Terry Michael

Please check out the podcast, How Positive Are You? An Interview with Director, Jennifer Wolfe ,  to hear about the making of the documentary, "This Child of Mine".

In the interview we discuss the experiences of the families from the movie, and their personal fights to make medical decisions that go against their doctors' orders, as well as my own interests and viewpoints on these issues.

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