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.