Let's Talk About Having Babies -- Before and After HIV/AIDS
September 19, 2012
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.