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. 

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.

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.