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.
Angela Davey: I want to piggyback on something Rusti said. In reflecting on what was different between my two pregnancies that I could attribute to being positive: With my second pregnancy, I was more engaged in my health care, more proactive. I was dealing with my HIV diagnosis just as a person dealing with it, going through the various stages of education, denial, family disclosure, do you start cocktails or not -- the journey we all go through. But then, when you compound it with pregnancy ... I really noticed that I had to step up my engagement and take control of my health care for good outcomes.
As far as support while I was pregnant: I was in a different country to begin with, so my experience was probably very different. I was in Mexico. I lived outside of Puebla, southwest of Mexico City. We were struggling just to get medication for Lilly's father, since Mexico's health system is very different than here, especially in regards to getting HIV meds.
It took a while for us to be able, financially, to move back up closer to the border where I could access health care. But I was real fortunate in the sense that, through the University of California-San Diego, I went to, as I said, a women's clinic that was specifically for HIV-positive women. The staff there made me feel that I was doing everything I could do. They were there to help support me in that, to have a good outcome.
But as far as community and family, I didn't have much of that kind of support. I was living in Mexico where there was no law to protect you on HIV disclosure. My daughter's father mentioned our HIV status to our landlord and they promptly kicked us out. There were a lot of life stressors. I had also had a history of chemical dependency. Looking at those cofactors that came into play in my history, as far as mental health and risky behavior, each one of those took on even more significant meaning, and had another layer to it, due to the fact that there was now another human being involved. That weighed heavily on my shoulders, wondering if she was going to be OK.
I didn't gain weight with her; I lost weight. She was premature. And then, after she was born, 9/11 occurred, and the borders closed. I was on the Mexico side, and I was locked out of the States for eight months. Luckily, I had her AZT for six weeks. But I didn't have medication for myself. I didn't have any follow-up care after that until I was able to return to the States. That was pretty stressful -- not having that test to confirm that she was HIV negative, and not having that medical support.
But I did have the six weeks of AZT, and she is negative for HIV and hep C. And since then, I've also become negative with hep C.
Shana Cozad: Excellent!
Angela Davey: Yeah. It's been a journey. It's very draining, you know?
Shana Cozad: Excellent answer. Jessica, how about you? Were you able to garner the different kinds of support networks that you needed?
Jessica Mardis: I was very fortunate. Like I alluded to earlier, my doctor and his staff -- everybody at Coastal Family Health Center in Gulfport, Miss., where I was living at the time -- they began to know me over the years through my treatment. My doctor taught me to believe in myself and get educated, learn everything that I could. That helped me make the decision to keep my son, and continue to hope that he would be OK. And he was.
Unfortunately, my son's dad passed away in 2005. That made things really hard. He was 2 when his dad died. But I held strong. As the other ladies have alluded to, as far as substance abuse: After testing positive, I did turn to cocaine, but after my son's father died, I didn't. I didn't go back. I kept strong for my son. We've just held on together. And he's healthy and happy.
I had a good support network. I had friends. I became part of a support group right around the time that John got sick. That helped me a lot. Going through the pregnancy, I was very lucky to have his dad with me. He was really good. He was there the whole time we had to give our son AZT -- and I don't know about the other ladies' babies, but mine, he learned real quick how to spit it out. Very nasty medicine.
Rusti Miller-Hill: It doesn't taste good!
Shana Cozad: Mm-hmm!
Jessica Mardis: Yeah. Because, you know, we tasted it! We had to go through the whole training process before you leave the hospital, where they show you how to do everything. But I'm so grateful for that time that I had with his father. It's bittersweet. Kind of like what Rusti was talking about: With all the ups and downs, life can be so hard, and full of stuff we have to go through. But I'm grateful.
Rusti Miller-Hill: It's all part of the journey.
Jessica Mardis: It is part of the journey.
Rusti Miller-Hill: I was just thinking, when you talked about the six weeks of AZT for the baby after giving birth. I am a Protestant, and my husband's family is Seventh Day Adventist. Many Seventh Day Adventists choose not to use prescription drugs. So, it was really, really hard to teach each family how to administer the medication, and why it was important that it was given correctly, on time, the right dosage, every day. For me, it just solidified that HIV lived in our house. I am the only person in my family that's positive. My husband is negative, and married me knowing that I was positive. Sometimes, it can be the big elephant in the room. Nobody wants to say it, but we know that it's there.
I think having to deal with our son being on the medication really made everybody come closer. We were two families that were joined together by me and my husband. While we had all been cordial before, the reality of it was that they were on one side and my family was on the other side. But having Brandon made them see beyond that. It brought us together as a unit. They came together and rallied to support us, knowing all the facts. Because through the medical team that we had, we had every question answered. We had to sit down with our families and talk to them about the possibilities: the fact that I received an AIDS diagnosis during the pregnancy, and that the reality of my dying might have seemed more imminent at the time. It really brought us together, as a unit.
Whatever differences or dislikes that might have existed seemed to just fall away. Because, once he was born, they understood that this was real, that we needed them in order to survive. Because I went back to work six weeks after he was born, like many working moms. I didn't take the six months off. After my six-week checkup, I said, "Look, I need to go back to work. I'm getting stir crazy here in the house!" And they all pitched in. My mother-in-law said, "You can bring him over during the week, and I'll watch him." And my mom said, "Well, if you need somebody on the weekends just to get some time away, I'll watch him." Everybody understood their role and that's what made it so much more appealing.
My first pregnancy was a big secret -- nobody knew I was pregnant. During my pregnancy with Brandon, I had a baby shower; I had two baby showers. The family support was huge. It was wonderful. It was in spite of HIV. It was a wonderful experience that brought two families that might have been otherwise cordial to a place of really loving and understanding one another.
Now, my son is 17. He'll be a senior in high school come September, and we have been together, joined at the hip as a family, since his birth. Whatever life throws at us, whatever we go through, we handle as a family. And, because I'm the only person that is positive, when I get sick, everyone takes their cues from me and how I handle whatever it is that's going on. Then we move from there.
In spite of HIV, I got all of this. I'm so grateful for the strength that it brought out of us as a unit.
Shana Cozad: It's like the ideal situation. If you could choose the best way possible of having it work out, that's what you got. That's so beautiful. You were so blessed and so lucky.
I can say that, to this day, I haven't seen my mother in at least five years. I've seen her about once or twice over the last 20 years. She refuses to say the words "HIV" or "AIDS." She'll just say, "How is your health?" She was not supportive of me having children, didn't believe it was OK or good. By the time my pregnancies happened with my girls, the statistics with the cocktail showed that there was only a 1 percent transmission risk -- she felt that that was too high. So I didn't have any family, and my in-laws were not supportive. My husband's mother did not want to bond with my children. If they were born positive and they were going to die, she didn't want to have to grieve that loss. So she backed away. So all of my support, whatever support I could garner, had to be directly from the HIV community.
My support was kind of dual. There was pregnancy care, and then there was HIV care. And a lot of those appointments happened on the same day. But the pregnancy care -- those people were on the outside of knowing what exactly was OK, or what was required. Throughout the entirety of both pregnancies there was a slew of back-to-back appointments every two weeks, the "high-risk" label, and this very condescending attitude toward me.
But then, once I stepped inside the HIV community ... A lot of the men in the HIV community were amazingly supportive. They were like, "Honey, if you can do this, and your risk level is 1 percent, go do this! This is an opportunity of a lifetime." They would say all the time, "If we could do this, we'd be doing it. We'd be having children. But we can't."
Rusti Miller-Hill: That's it.
Shana Cozad: Now that I remember, a lot of the men really made me feel that I was doing the right thing, that I had made a good decision, and that everything was going to be OK. It's in our HIV community that there is so much support. Because where else do we go to when it gets hard?
Rusti Miller-Hill: It's back to the community. Get refueled, and go back at it again.
Shana Cozad: That's right.
Jessica Mardis: That was almost all I had. My mom committed suicide in '04. Then my son's father, after refusing to be tested, we found out rather quickly, right before he died, that he had AIDS. So he totally didn't come to terms [with HIV]. During my pregnancy, everything was a complete secret with his family, as far as me being positive -- which added more stress, of course, on top of everything.
But the HIV community was my support -- and so was my doctor. I can't sing his praises enough even though he moved away. I miss him very much. Dr. Russell was just absolutely amazing.
Rusti Miller-Hill: We are always blessed to get that one doctor in our life that really gives us the foundation from which to build.
Shana Cozad: Thinking back to the period of time after our babies were born: How did you all survive the wait between their birth and having them confirmed as HIV negative? And Jessica, you mentioned how your baby would spit out his medicine. How did you all get through having to give your kids their meds?
Jessica Mardis: As far as the medications go, it was intense! But let's start with the wait. Oh, gosh. It was probably some of the worst times I've ever had to go through, because you don't know. All his tests came back negative, but I know other people whose babies have had positive results soon after birth, because they still have the mother's antibodies, and then their child comes up negative. But the waiting was the hardest part, because even if you do everything right, or think you did everything right, or hope you did everything right, you still just don't know.
I was very fortunate, because Gabriel's father helped me administer the medications. We got very good at it. There was just a certain way we had to hold his face and give it to him real quick -- kind of just shoot it down the back of his throat. Because you do have to administer it correctly, and four times a day. Oh, it was intense, it really was. But would I trade it? No. It was worth every second of it, because now I'm blessed with my son and he is healthy. I am thankful for the medications. I did not have to have a Cesarean. They considered it, but they went ahead with the vaginal birth. Everything went well.
Angela Davey: I don't have much to add as far as tips for dispensing meds to infants. I was the sole care provider for Lilly at the time and she was pretty good about taking her meds. I did worry about side effects, and have experienced years later that her inability to digest any sort of plant sugar may be due to her early experience being given AZT. In short, AZT has been linked to damage in cells that perform this function. However, the benefits of taking the meds far outweigh the side effects, and the collection of data supporting this whole idea are still up for debate.
Shana Cozad: Well, I can say that, regarding the whole surviving the wait and administering the AZT medicines to my girls, there wasn't any training. Was it Jessica and Rusti that said that they actually went through training? Well, we didn't have anything. I remember post-delivery, the day after my daughter's birth, they brought in a bottle of liquid AZT and they said, "Here you go!" The pharmacist had just written instructions on there. So I read them. Then I called the pharmacist and I double-checked. And I read them again. And I was just like, "OK."
The medicine was really gross stuff. It's really nasty. But thank goodness they only had to endure that for the first six weeks. All I remember was that the pharmacist said, "If your baby spits it out, or doesn't drink it all, you have to give them another dose to make sure that they get it." And one nurse had taught me how to hold her head down, and kind of tilt her body upside down, and rock her that way because that helps them swallow. That technique worked.
Then, before I knew it, six weeks had flown by, and the issue became an issue of the past.
But waiting for the PCR test results to come back -- and for my girls, it was tests at two weeks, two months, and six months -- I felt like I knew after the first two-week test; I knew that my girls were OK. The other two tests were just more confirmatory. I was really relying a lot on the information that the mother-to-child transmission rate was 1 percent for women who were in care, and had their viral load undetectable. That was our situation. So my prayer and my wish for my daughters was that that 1 percent was going to hold true, and that my girls were within the 99th percentile. So it was only the matter of waiting for the first test that had a fear factor for me.
Rusti Miller-Hill: My son's first PCR test was inconclusive. We were on edge. But we were part of the clinical trial, and we had a team supporting us, and our doctor was really, really confident that he was negative. We finally got the results to support that, and then the confirmatory letter from the CDC [U.S. Centers for Disease Control and Prevention] -- and we still have that letter till today. It's part of Brandon's baby book. He pulled it out about two weeks ago and said, "What is this about?" I explained it to him all over again.
Once we got the confirmatory stuff, we were fine. But it was nerve-racking. I think our family members were more on edge than we were. We had thought it over already, and resigned ourselves to whatever the test results were going to be; we would handle whatever came after, either way. You always hope for the best, but you prepare for the worst. Because I'm a planner, I need a plan A, B and C. So I needed to know what we were going to do if he was positive. How were we going to handle it? What would we need to have in our arsenal that would get us through? And so I began to use the community to gather those resources, to put those things in place.
Thank God we didn't have to utilize them. But knowing that they were there, that people were waiting, that resources were available, just made it that much easier to deal with. And I had people calling: "Did you hear anything yet?" You know, really, just concern, genuine concern, and support. And that made the difference.
The medication was -- oh, my God, it was the worst. As I said, we were trained first. It was part of the clinical trial piece. They sent us to a class, and we practiced on dolls. We used to joke about it.
But then, having to come home and say that the medication that I'm taking, we now have to give to the baby, and having to explain and stress to [family members] the importance of it being given on time and at the right dosage, and that when he wasn't with us that it was their responsibility to make sure that that happened, was hard. Because, you know, we're people. Penicillin: It's a seven-day regimen, but in two days, when you feel better, you don't take any more.
I can remember being somewhere and calling and saying, "Did you give him his medication? Did you remember?" It just got to the point where everybody was like, "OK, we got it. We got it. We understand." The relief of family members understanding, and being supportive, made it OK.
I became an advocate as a result of the experience of my pregnancy. Dealing with the first four medical providers -- I think a lot of their resistance to work with me came from their own personal stuff, but I think most of it came from the lack of information for women around HIV in the early '90s. And doctors weren't really willing to explore.
I was fortunate to have, besides the team, a provider prior to that, before I even got pregnant, who was a physician from Paris. She was here doing an internship. I was her only female patient, and she had about 25 male patients. Together, we learned about HIV. She gave me the foundation, the basic information. Then I took what I learned from her back to the community, to our women's support groups. I was talking in circles of other positive women, sharing information and trying to gather our resources.
It was that information that I learned from her that helped me to begin conversations and build relationships that would later save my life in the community. Those bonds, those beginning relationships, are the ones that have held me together for the last 20 years.
Angela Davey: Rusti, it's women like you, who participated in studies and have become advocates, that have really helped. Thank you, is what I'm trying to say.
Rusti Miller-Hill: I appreciate it. Thank you.
Shana Cozad: Yeah, she laid the foundation for us.
Angela Davey: Right, and that's really important. Because when I came back from Mexico, Lilly was 8 months old. Her father had passed from AIDS at that time. When I came back to the States, I went back to San Francisco, which, for me, was a trigger place as far as chemical dependency -- especially at that time, when I had only been clean a couple of years. Shanti is a wonderful organization there. But at that time, at least, it was really difficult for me to find a community and services that were geared toward women. There was tons for men. And, because I was just coming out of about seven or eight years of chemical dependency, I hadn't been in contact with my family. So I didn't have any family support.
So I got on a train and came to Minnesota, where Mayo Clinic was. I didn't know anybody. Came with a backpack and my kid and said, "I've got to go where the best medical care is" -- as far as I knew. So I came here. And, wow. It was like stepping back 20 years. Even though Mayo Clinic's here and is world renowned, the community itself is the Midwest. Here, in my area, there's an HIV clinic -- one of the best, with it being Mayo. But there's no HIV community support. We don't even have a support group.
My life is a journey within itself, with its ups and downs and lessons. Then you add the layer of pregnancy and HIV, it gets more interesting. But with that brings more opportunities. I had to build my own community around me for support. My mother does support me, and is very open and present; but in the rest of my family, HIV is "that thing you have." They can't even say the word. When I'm back home, they still bleach everything. They won't let me stay in their houses -- they put me in a hotel.
So, because of that adversity and what I've experienced, I've been working on getting those services here. I'm actually in the process of opening up a center, bringing in the L.I.F.E. Program to help support people in the community in southeast Minnesota. I got myself on community boards. I'm working with Mayo Clinic to do an initiative. It really has turned into a blessing.
Rusti Miller-Hill: Congratulations!
Angela Davey: Thank you! For those people out there who are reading this, saying, " I'm alone, I'm pregnant, and I'm feeling overwhelmed," if you get support and you take care of yourself in a full, wraparound, whole-self way, it can be a very beautiful experience.
I didn't always feel that way. I think all of us, probably, at some point, were going, "Ugh. What did I do? What am I doing?"
Rusti Miller-Hill: "Should I be doing this?"
Angela Davey: Right. Now, my current partner -- we just had our 10th anniversary -- he's HIV negative, as is my child. But I've developed pulmonary hypertension. I need a liver/heart/lung transplant. My health has continued to present new challenges. HIV is like my most manageable disease at this point. Ten years ago, I would have never thought that was possible. I thought it was this huge, over-encompassing burden, and I wondered would I ever get to grips with it.
Now it's like, if all my other stuff was as easy as my HIV, I'd have it made. You know? Does that make sense?
Rusti Miller-Hill: Yes, it makes a lot of sense. It makes a lot of sense.
Shana Cozad: Yes. It's like, I have HIV. I can handle that stuff. I can do my meds, the millions of doctor visits, the pharmacy visits, and the lab draws. And all the obstetric stuff, sure, I can handle that. Not a problem. Heart stuff? Oh, my God. Now you're scaring me.
As we get older, and as this disease progresses, other stuff is creeping up.
Jessica Mardis: The cancers.
Shana Cozad: Yeah. We're presented with new issues that were not even assumed 15 years ago. It's like, OK, I've got to buckle down. How do I deal with this one? But, yeah, HIV, that's fine.
Rusti Miller-Hill: I'm 50 and a grandmother, in full menopause. No literature on that and HIV. I'm struggling trying to find information about that. It's like the HIV is the small stuff.
I remember when I used to pray, "If you just give me one more year. If I could just see my son grow to 1 year old or grow to 3." Then 3 turns into 5, and 5 turns into 7, and 7 turns into 10. Now he's 17 and we're looking at college. And I'm still here. Life is still going on. At some point you just stop looking at life in a manner of existing, and you just start living. You let go of the fears, you let go of the what-ifs and if-onlys, and you just live for each day, as it is.
If you're wondering if you should have a baby, or go through that ... it was the best journey I have ever taken. I would not change it for anything in the world, even with HIV. Because I had community support. I had family support. But most of all, I had my trust and my faith in my Higher Power, and I knew that, as long as my heart was in the right place, things would work themselves out -- no matter what the outcome.
Of course, I didn't want him to be infected. But two consenting adults making a decision about bringing another life into the world takes more than just the medical support of a provider. It takes faith, it takes community, it takes education, and it takes the support of knowing that you are not in this by yourself.
This transcript has been edited for clarity.