Wednesday, October 5, 2011

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.