By Kathleen Tyson
Web Exclusive - September 2001
Editor’s note: Last year, Kathleen Tyson of Eugene, Oregon, tested positive for HIV during her pregnancy and later was threatened with the loss of her child if she breastfed. To personalize the issues surrounding HIV, breastfeeding, and parental informed consent, Mothering asked Kathleen to write about her experience.
September 17, 1998, is a date I will always remember. I was six months pregnant, and at 38 feeling a little old for the rigors of pregnancy, a full-time job, and the care of our ten-year-old daughter. But my husband, David, and I were joyfully anticipating the birth of our son. Then I received a call from my midwife at the Peace Health Birth Center. She told me my test results were in and asked if I could come down immediately and talk. This was worrisome. I located David, and we went to the birth center, where I was led to a private room. There the midwife told me gently that my HIV test had come back positive.
I was incredulous, then devastated. The next day, we consulted a high-risk perinatologist, who told us that his suggested course of treatment would be repeated doses of the drugs AZT and nelfinavir (a protease inhibitor). These, he said, would help to reduce the risk of transmission of the HIV virus to my unborn child. Of course, he added, I also would have to have a cesarean section at birth.
I walked out in a daze. I had been feeling so healthy. Since high school I had been a vegetarian, practiced yoga, studied dance. I ran about ten to 16 miles per week, gardened, played with Faye. I was in the best, most vigorous shape of my life.
But that ended after I started on the prescribed drugs. Every morning, as I arrived at work, the first dosages would hit my bloodstream, and I’d be overcome by incredible exhaustion. The sicker I felt, the more I worried about the safety of the drugs and their effect on my unborn son.
My doctors brushed aside my concerns, telling me that the consequences of transmitting HIV to my son would be much more devastating than any possible side effects from the drugs. He added that children born to mothers who had used AZT were fine, even though he could not give me any studies to prove this.
I remained worried, haunted by thoughts of thalidomide and birth defects. Six weeks into my antiretroviral medication regime, having read everything I could find about AZT and pregnancy – and having found most of it extremely disquieting – I made the wrenching decision to discontinue the drugs.
Then with the support of my midwives, we started formulating a birth plan: vaginal delivery, no AZT during delivery, and no AZT for our newborn son. We felt confident we were doing the right thing, since we had been unable to find any studies showing that AZT, an extremely toxic drug, was safe for newborns.
Finally, after carefully weighing all of the apparent costs and benefits (based on what little research we could find), I decided to breastfeed. The thought of not nursing had been so painful to me. Now, knowing I would nurse, I felt relieved and joyful.
Two weeks before my due date, I went into labor. Ironically, I had an emergency C-section; my son’s umbilical cord was prolapsed. The first thing I saw after I woke from the anesthesia was Faye holding our beautiful newborn, Felix. I held him and nursed him. All was well.
However, the personal trauma and upheaval we had gone through before the birth of Felix was nothing compared to what came after.
Less than 24 hours after Felix’s delivery, an infectious-diseases pediatrician stopped by our room, supposedly to counsel us about treatment for our son. Immediately she launched into a lecture about the importance of AZT. Then she told me I must stop breastfeeding at once. We listened politely, then told her we felt well informed on the issues and, because of that, were declining drug treatment for Felix and would continue breastfeeding.
The pediatrician became hostile and argumentative, telling us we were relying on biased information and were endangering our son. Later that evening she returned, ostensibly to see if we had changed our minds. I was alone, David having gone home briefly. Feeling weak, vulnerable, and exhausted, I was in tears by the time she left, warning me, as she walked out the door, that she would now be going to the Ethics Board of the hospital and their corporate lawyer.
Within an hour, a petitioner from Juvenile Court, escorted by an armed police officer, came to my room. I was issued a summons to appear in court two days hence at 8:30 a.m.
Dumbstruck, I stared at the paper. On it, the state was charging us with "Intent to Harm" and threatening to take custody of our baby.
What I then found – and still find – the most horrible aspect of this moment was that I could not imagine anything more harmful than shooting my son full of dangerous, toxic drugs, while also denying him the known immune-supporting effects of breastmilk. And what of the incredible nurturing effects of nursing? I simply could not conceive of denying my son that.
But at that moment, I also felt powerless and profoundly afraid. I did not want to lose custody of my newborn son. With the child-welfare petitioner still in the room, I called the nurses to bring formula and bottles. Felix had his first taste of formula that day, as I cried.
Several days afterward, we went to court. There, based on testimony from one doctor, I was ordered to stop breastfeeding completely and to begin administering AZT to Felix every six hours around the clock for six weeks.
I was heartbroken. But we also decided to fight on.
Today, we’re still in the middle of that fight. As our case has gotten national attention, we have received, in turn, an astonishing outpouring of support from people everywhere.
Soon after the first hearing, the local child-welfare agency offered us a deal: If I would agree not to breastfeed, the child endangerment case against us would be dropped, and we would be allowed to go on with our lives.
I refused. I did not want to be a martyr. And God knows, I don’t want to lose custody of my son. But the issue of how to treat Felix and the broader issue of whether the state can mandate medical treatment for anyone’s child are simply too important to ignore. I sincerely believe that light needs to be shed on this topic, and that the practice of ignoring the well-considered and deeply reasoned plans parents have for the care of their children has to stop.
My experience is not unique. I wish it were. I would not wish for any other parent to be in my situation. It’s a terrible thing to have to make life and death decisions about the welfare of your child. But I’m the one who should make those decisions. No one else ever will love or worry about my child as I do. And with that knowledge to buoy us, I hope – and firmly believe – that we will prevail.
Kathleen Tyson was scheduled to have another hearing before the Eugene, Oregon Juvenile Court in April. For additional information about the results of that hearing and other aspects of the case, you can log on to the Web site www.televar.com/~tysn