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