Let's Talk About Having Babies -- Before and After HIV/AIDS
September 19, 2012
What's it like being pregnant and living with HIV? The past 15 years have brought studies that have shown, beyond a shadow of a doubt, just how low mother-to-child HIV transmission risk can go: less than 2 percent with the help of HIV meds and rigorous prenatal care. Despite this miraculous development, there's still abundant stigma directed toward women living with HIV who choose to become biological parents -- and there aren't many avenues for reaching out to other women who've been there.
Enter Angela Davey of southwestern Minnesota; Jessica Mardis of Mobile, Ala.; Rusti Miller-Hill of New York City; and conversation moderator Shana Cozad of Oklahoma. These four moms were all diagnosed with HIV in the 1990s, and each has given birth to (HIV-negative) children both before and after becoming HIV positive. In this conversation, the four women compare notes on where they sought support while pregnant, how they coped with the first uncertain weeks of their infants' lives and, of course, the joys and trials of motherhood.
This is part one of a two-part conversation. Read part two of the conversation, in which the moms share experiences parenting their kids -- and taking care of themselves.
Shana Cozad: The topic of becoming a mother -- of pregnancy, labor, birth, the whole nine yards -- is a huge issue for HIV-positive women. We face so many challenges with it -- not just the physical component, as far as bringing a new life into the world, but the challenges of dealing with our partners, our communities, and what people think or assume is going to happen to our babies. I can't remember a time when having children while HIV positive hasn't been a huge issue.
Just to briefly let you know who I am, and where I enter this conversation: I'm speaking to you from Oklahoma -- I live right outside of Tulsa. I've been HIV positive and had an AIDS diagnosis since 1993. I had one child before my AIDS diagnosis, and he's now 20 years old. I later got married, and I've had two girls through this disease. So I've been through the pregnancy, labor and delivery, with a child and with HIV, twice.
Angela Davey: I presently live in Rochester, Minn. I was officially diagnosed with HIV in 1997, and received an AIDS diagnosis three years ago. I'm a mother of two. My son was born in 1990, so that was prior to my HIV-positive status. My daughter was born in 2001, so that was four years after my HIV-positive status, and eight years after my hepatitis C (HCV) status, and 15 years after her biological father's HIV diagnosis.
Rusti Miller-Hill: I was diagnosed in 1991. I have two children: a daughter who was born in 1977 and my son, who was born after my diagnosis, in 1995. I was diagnosed with AIDS in 1995, during my pregnancy. I've been around for a long time; it's just been a journey, a real journey.
Shana Cozad: It sure has.
Jessica Mardis: I was diagnosed in 1995. I had a child in 1995, a son who I gave up for adoption. This is prior to my diagnosis, and also prior to my contracting HIV. In 2002, I got pregnant with my other son, Gabriel. He was born March 22, 2003.
Shana Cozad: It's really interesting that all of us were diagnosed in the '90s, and all of us had children before our diagnosis, and then we've been through the pregnancy process during this disease as well. Again, I can't reiterate enough how much the whole HIV issue stood out and was such a striking difference in all of my prenatal care, compared to what it was like with my pregnancy before I was HIV positive.
When I was 20 and having my first baby, it was just kind of simple. But then, when I had an AIDS diagnosis and I was going to my doctor's every two weeks for prenatal care, they kept labeling me "high risk," and the concerned look on everyone's faces during the whole pregnancy ... I remember having much more of an urgent feeling about the whole pregnancy. Do you ladies agree with that? Did you feel that there was a different feeling about your pregnancy once you were positive?
Angela Davey: Other than the fact that every pregnancy is unique, for me there also really was a difference between my pregnancies before and after my positive HIV status, along with my hep C status. I had my first child at home, with two midwives. I was able to nurse him. It was very, very rewarding. It was a big contrast to when I had my daughter.
I had been living out of the country when I found out that I was pregnant with her. I had about 1,600 T cells at that point, and I wasn't on a cocktail yet, so the fact that I didn't have access to immediate care the first trimester wasn't quite as huge. But I did have to get back to the United States for care, and then I did find a women's HIV clinic at the University of California-San Diego (UCSD).
My daughter was due on Sept. 11, 2001. I was scheduled for a Cesarean section because back then that was the recommendation, which they've now backed away from, at least in the community where I live now. I'd crossed the border for a check up on July 31. I was pale in color, not feeling well, having back pain; they called the doctor and it turned out I was in labor. I was then put in the hospital and had the C-section. Because she was a preemie, she went directly to an incubator. It made me feel very out of control compared to my son's birth in 1990, where I was very much in control and actually experienced the whole delivery process. I missed that with Lilly. Our bonding and everything was still there, but very different.
Shana Cozad: Rusti, how did you feel your pregnancies differed from each other?
Rusti Miller-Hill: For me, there were a lot of nuances to it. My first pregnancy, I was 15. I hid my pregnancy from my mom. They didn't find out I was pregnant until a week before she was born. So that first pregnancy was shrouded in secrecy and shame, and confusion. I had no prenatal care. I didn't share my pregnancy with anyone. When it was found out that I was pregnant, there was a big family disruption, and the whole bit.
For me, becoming pregnant with my son and being HIV positive sort of repeated the first pregnancy, as far as the family disruption, at first. I was very out about my HIV status, and my family was very concerned. My mom believed that I shouldn't have a baby because, as you know, in the early '90s, there wasn't a lot of information around women and HIV. Women were dying. Babies didn't have a long survival time. It was really crazy.
I had to convince my mom that this was something that I wanted, and that whether or not she supported me and my husband, it really didn't make a difference.
We also got a lot of indifference from medical staff. People were just not supportive of the idea of us wanting to have a baby.
But the pregnancy itself ended up being a beautiful experience, because I was able to garner from it what I didn't get the first time around, and what I needed in order to be positive and for us to have a positive outcome.
Jessica Mardis: I got a little emotional a minute ago. Both of my pregnancies were very emotional, but the whole adoption thing and all of that still gets me emotional sometimes. With my first son, I didn't think that I was ready to be a mom. I wasn't with the guy who I got pregnant by; it was a one-time thing. I was young. And then, after having him, I hooked up with another guy and that's how I got HIV.
My son Gabriel's father and I were together for a little bit over a year when I got pregnant with Gabriel. He wasn't supposed to be able to have kids, and we weren't planning on me getting pregnant. So it was really scary. I didn't know what to do. That was 2002, and I didn't have a lot of information. I'd buried my head in the sand a little bit, between being diagnosed and that time. I took my medications and stuff, but I was uneducated about HIV, to say the least.
I'm very fortunate, because I had a good doctor. My doctor really sat down and talked to me about it. If he hadn't, my son probably wouldn't be here. Because I was terrified. I didn't want to have that burden of having a child and having him be born HIV positive. Thankfully, my doctor told me, "There are options. You can have this baby, and the baby can be OK." Now my son's 9, and he's healthy.
It was probably the most terrifying two years of my life -- the nine months being pregnant, and then the testing afterwards -- but I'm grateful.
Shana Cozad: It's probably hard for other women to realize what that's like for us. It's like we have this mantra that we're having to say to ourselves throughout the entire pregnancy: It's one thing for me to be HIV positive, and to deal with this disease, but please don't let this happen to my baby. Please don't let this happen to my baby. You're saying this every day throughout the entire pregnancy, and it's a huge responsibility. It's a responsibility that's out of our hands, on a lot of levels.
I found that information on HIV transmission from mother to child was really, really hard to nail down and get a straight answer on before the year, say, 2000. Some people were one way about it, and other people were another way about it. The attitude about HIV-positive women having children was very negative. It was very unsupportive. "Even if there's just a 1 percent risk of transmission, you don't want to do that." Well, excuse me. I'm a woman. This is my body. Regardless of what you think or decide, sometimes pregnancies are going to happen.
Rusti Miller-Hill: Definitely. For me, because I had a history of substance abuse, and because I was very vocal and up-front about that when trying to find a provider, that fueled a lot of the resistance and negativity that I encountered. I actually had to go through four different medical providers before I was able to find a provider that would support my husband's and my decision to have a baby. The first three flat out said no, that they wouldn't support it. One provider actually encouraged us to have an abortion.
I live in New York, and one of the things that helped me the most was reaching out to my community, talking to other women in the community who were looking to parent, as I was. In that way, I was introduced to the ACTG 076 clinical trial, which was the groundbreaking perinatal HIV study; I became a part of the clinical trial at 10 weeks of pregnancy. I'm still with that same doctor today, and my son is 17 and HIV negative.
Had I not found that support, that information, that doctor who believed in the idea of women being mothers in spite of HIV, my son might not be here today. So I know that information and support are very, very important. But it's hard. Women are scared. It's easier to say, "I'd rather not do this," than not give in to the negativity that they run into. I remember thinking, just because I have HIV does not mean that I stop being a mom, or that I stop having those nurturing feelings.
I had a team supporting me, so it really helped. There was a midwife. The doctor I worked with on the trial was the head of immunology at that hospital. There were people that I could call at any hour of the day to talk about whatever it was that I was feeling, whether it be the fear of transmitting the disease to my son, or the weight of the possible stigma and discrimination that I might face in the community, to finding the right information to give to my family so that they could get on board with the pregnancy, and be able to help me enjoy all of the nuances that that brought with it.