This Month in HIV: Having a Baby When You're HIV Positive
Getting Pregnant From an HIV-Negative Man When You're HIV Positive
Dr. Kiessling, can you now walk us through all the methods an HIV positive woman can use to get pregnant from a negative man? I know that's not your expertise.
Dr. Kiessling: Well, the simplest way is just simple insemination. And, depending on the sperm count of her husband, the cup that I'm describing that we use for our HIV-negative women would also be used. That would be a very likely form that she could use to get pregnant.
What she has to go through is:
If you have a baby that's developing up to, say, the second or third trimester, that baby is very unlikely to have any HIV disease. It gets infected at the time of delivery. So all a woman who is HIV infected has to do is go through a standard gynecologic exam.
She may have to go through IVF, if she has an infertility problem. If she isn't ovulating, if she has any number of other conditions independent of her HIV disease, she might have to go through IVF. But a simpler way would be to go through some kind of an insemination procedure.
Are there many clinics that will take an HIV-positive woman today?
Dr. Kiessling: I think there are more than there used to be. Because obviously, to the clinic, the risk of infecting her isn't there. She's already infected. What they have to do is make sure that the dad doesn't get infected. To do that, you simply have to collect the sperm. He has to collect a semen specimen, and then it can be used for an insemination procedure. You could use the intrauterine insemination that I described earlier; you could use the cup insemination that we use; or the woman could actually go through IVF.
In all those circumstances, since she's already infected, what you have to depend on is that her care person will keep her under good antiviral therapy throughout the pregnancy and the delivery to protect the baby.
Do you refer patients like this who call you? Do you know clinics across the country who can help women who are HIV positive have a baby?
Dr. Kiessling: Yes. We actually do have a list of people that we can refer people to.
Great. Wendy, I understand yours was a much longer struggle. And you have been positive since the dark days of the epidemic, in 1993, when there was still no decent HIV treatment. Was it always in your mind that one day, if you survived all of this, you would have a child?
Wendy Williams: The reason that I originally tested, in actually the end of '92, was because my husband and I had decided that we wanted to start to try for a baby. At that point, we had been married about four years. When we got married, we didn't know my HIV status. We always intended to have a family.
And then, when we decided it was time, and we were ready, my husband suggested to me that I get an HIV test. I had no reason to think that I was positive. He had actually already had a test, and he was negative. But I went ahead and I got the test. We were completely shocked and devastated to find out that I was, in fact, positive.
At that point, similar to what Christa was talking about, everything stopped when we got the diagnosis. He was, fortunately, still negative, even though we had been married four years and had never taken any precautions because we didn't think we had to. But fortunately, he was OK. Then the focus was all on my health.
And as you say, there wasn't anything available at that point, except for AZT [Retrovir]. And we had to decide whether I would go on treatment and what I should do. I did, in fact, go on treatment. And that was a whole story in and of itself, with sequential monotherapy. I did all sorts of the things that people did in those early days that turned out to be the wrong thing to do.
But fortunately, I stayed healthy through that whole time. I was always asymptomatic. I started to think, a few years after my diagnosis, that I wasn't getting sick, that we still wanted to have a family, and that it was something that we didn't want to lose. We just felt we had lost so much when I was diagnosed that this was something that was so important to us that we just couldn't ... we couldn't really let go of it. We wanted to see if we could go ahead.
"It was so empowering to me to hear a health care provider saying that, 'Yes, you do still have the right to go out and have a child, even though you're positive.'"
-- Wendy Williams
It was at around that point, in around 1994, that the studies were coming out showing that if a woman took AZT, she reduced her chance of transmitting the virus to the baby by, I think it was, two thirds. So I was starting to think maybe there was some hope for me to actually get pregnant. That's what we did. I remember, I went to see a nurse speaking about HIV, and she was talking about how HIV-positive women could get pregnant. It was so empowering to me to hear a health care provider saying that, "Yes, you do still have the right to go out and have a child, even though you're positive."
It was at that point that we really started thinking about my getting pregnant. We wanted to make sure my viral load was undetectable. It was, I guess, around '95. At this point, I was starting to think about what regimens I could go on.
Because now, I was having to think, I need to stay undetectable for the whole time that we're trying to get pregnant, and while I'm pregnant. I really wanted a regimen that would be enduring and would be durable for me.
So that's kind of where the focus was. There was -- I mean, I'm simplifying the emotions that were involved in the whole decision, and deciding whether I should, in fact, get pregnant, whether we should look into adoption, whether we should look into surrogacy. But after going through a lot of therapy and back and forth, and lots of different decisions, we decided -- my husband always wanted to do it ourselves, for me to get pregnant.
What year was this, when you reached the decision that you were going to do it?
Wendy Williams: Well, the first time we decided we were going to definitely go ahead was in 1996. That's when we found a doctor. We found a wonderful OB/GYN at a hospital in New York, and she had an HIV clinic. She had treated many women, and was very encouraging to me.
Can you give me her name?
Wendy Williams: Her name was Janet Stein, at Beth Israel Hospital in Manhattan.
Is she still around? Is she still doing this?
Wendy Williams: I think so. As you said, my son's six now. So, for the first few Christmases we sent cards and pictures, and I kept in touch. But the last time I spoke to her was probably about two years ago, and she was still doing it. She was wonderful and warm, and again, she just treated me like a normal person. There was no judgment. She didn't question whether I had the right to do this or not. She just made me feel that it was OK, and that there wasn't anything wrong with what we wanted, that it was normal and it was OK, and we should go ahead with it.
Did other people make you feel that way?
Wendy Williams: I was afraid that that would happen.
So it was more in your mind. You didn't actually experience that.
Wendy Williams: No, no. I mean, I interviewed a few doctors, two or three female doctors, OB/GYNs, and they were all good. But she was the one. She was always a very warm and nurturing person. I just connected with her right from the beginning. But there was a huge struggle within me as to whether it was OK for me to try and conceive, and to take this chance with another life. With my husband, you know, we could do the artificial insemination, so I knew he would be OK, and he would never be exposed. But it was this life, this child that never had a say in this risk that we were taking, because we wanted to have a baby.
Christa: Excuse me, but we got that. My husband got it from a male doctor who had examined him. I remember it. I didn't talk about the emotional stuff. But I'm just sitting here, shaking my head, with tears running down my face, because we went through exactly what you're talking about; it was just a little bit reversed. I remember that -- feeling so judged and so angry. Because this person really didn't have a right. They weren't standing in our shoes. Anyway, I just wanted to put that out there. It was in my husband's head, but we really had that experience from a doctor.
Wendy Williams: When I was very, very first diagnosed, in the early '90s -- and this was before the 076 study, which showed AZT could reduce transmission from mother to child -- I asked my first doctor, "What about having a child?" He said, basically, "Forget it." He is no longer my doctor, obviously. But we went through really a long and difficult task with the decision as to what we'd do.
My family was always very supportive, though, especially my parents. They always wanted us to go ahead. I don't know if it was because my mother just refused to believe that I would have a positive child. But she just always wanted that for us. They provided a lot of support financially, as well, once we got started in the process.
So did you change HIV medications when you started trying for a baby?
Wendy Williams: Yes. Yes. I had been waiting and waiting to go on the protease inhibitors, because I wanted to make sure I would have a great regimen that was going to last me, and I wasn't going to have to worry. So, sure enough, we were ready. I was going to start. I went on a new combination. I went on a protease inhibitor and two nucleoside analogs. And my viral load was undetectable. We waited about two months and decided to go ahead and try artificial insemination ourselves.
I was working with Dr. Stein, but we didn't go into the clinic for the actual insemination. We did the home method, with the little -- it's not really a turkey baster; it's just a hypodermic syringe, without a needle.
So they gave it to you? You get that from the doctor? Or they tell you what to use?
Wendy Williams: I guess we just got the syringe. I guess we got a prescription for the syringes, and we went and got them. Then my husband ... it wasn't particularly romantic, you know. My husband would produce the sample and then -- and you know, we're not talking, like, large quantities of stuff. And then you have to get that into the syringe. Then you have to insert it [into your vagina] and push the plunger. Anyway, the whole ...
Do you have to stay still, or something, afterwards? Do you have to put it inside of you and then just lie down, or something?
Wendy Williams: Well, I did, with sort of my legs up in the air, and my knees up, and stayed that way for a while. Somebody said, "Oh, if you have orange juice afterwards, it helps." Or, "If you have pizza afterwards, it helps." You know, you hear all these crazy things.
Anyway, we were really amateurs doing this. We didn't know what we were doing. We did our best.
What year was this?
Wendy Williams: This was around '96, now. It didn't take after a couple of cycles. But what was worse than that was that my viral load rebounded, and the regimen that I was on failed. What had turned out, I think, is that the drugs I was taking, in addition to the protease inhibitors, I was resistant to. This was in the early days of HIV drug resistance. I don't even know if the resistance tests were actually commercially available at that time. I had been on sequential monotherapy and I chose a regimen that seemed to have potential to succeed, and just failed within a very short time.
That was devastating, because as soon as my viral load went up, we stopped. I didn't want to take the risk of transmitting the virus. Then we went through a whole difficult period of trying to figure out what to put me on, a new regimen.
I just remember -- this was right when the resistance tests were becoming known, and I had to actually find a doctor to send my blood to in, like, Amsterdam, or something, where the resistance tests were being done. It was an experimental test, at that point. There was no insurance coverage. I think my parents paid $700 or $800 so that I could have the test done. Like I said, I had to find a doctor who would do it. So there are so many parallels with Christa's story, in different ways.
"I remember lying in bed at night, and my husband was away on a trip, and feeling completely alone, and feeling no one can help us."
-- Wendy Williams
I remember just feeling so ... I remember lying in bed at night, and my husband was away on a trip, and feeling completely alone, and feeling no one can help us. There's nobody who can tell me what to do, what to take, what's going to work. And there just seemed to be so much at stake.
But we did. We found a doctor who would help us, who did that [resistance] test. We came up with a combination of two protease inhibitors and two nucleoside analogs -- which, again, looking back, was -- I was on ddI [Videx] and d4T [Zerit] when I was pregnant, which is absolutely not recommended to do, but at the time we didn't know that. I was resistant to AZT. I was resistant to 3TC. So I didn't have a lot of choices.
They were coming out with guidelines then, treatment guidelines for what pregnant women should do, or women who wanted to get pregnant. I didn't apply to all those guidelines, because I was already resistant to AZT. But nobody could tell me what to do. Even people who wanted to help, the scientific knowledge hadn't caught up to where I was. So we were really in the dark.
But I was so determined, and my husband was so determined. We so wanted a child. I just felt there would be a hole in my life if I weren't able to have a child. It was so ingrained in me that that's what we should do, and that we shouldn't let anything stop us, if possible, from doing that.
So it became like an obsession.
Wendy Williams: It did. It really was. I mean, I thought to myself: What will happen to us if we don't have a child? I know, again -- like Christa said -- there are couples that face this all the time, and there are couples who are not able to conceive, or aren't able to adopt, or for whatever reason, have to find a purpose, and a way to fill that hole. I'm sure people do, and there are lots of people who choose not to have children. But for me, and for my husband, having a child was so central to our vision for our lives that it was almost impossible to let it go.
So we didn't. We kept trying. I finally got on a combination, and it worked, and I was back down to undetectable. I went back to Dr. Stein and I said, "OK, we're here." At this point, I'm getting older, too. I was about 36 at this point. And Dr. Stein said, "You've got to do it. You have to do it now. You can't wait any longer. It's your age more than anything that is going to be a problem." Then she said, "You need fertility treatment."
I said, "What are you talking about?" You know, when we had tried to conceive ourselves -- and there were some other signs that she had seen -- that I had fertility issues. That was devastating, also.
What were the particular issues she said you had?
Wendy Williams: I have something called polycystic ovary syndrome, which means my hormones are not quite in balance, and I don't ovulate every month. So what happens is, an egg doesn't get released, and it stays in the ovary, and you get these little, tiny cysts. That's why they call it polycystic ovary syndrome. It's not harmful to my health, but it means that some of those cycles that we were trying ourselves to do the artificial insemination, I might have not even ovulated. There might not have even been an egg there.
So she said I needed to see a fertility specialist. She did recommend me to somebody, another woman in Manhattan. Her name was Nellie Schlachter, and she was also wonderful. I mean, everybody was represented in her office. And I just felt that it was so ... Again, it made me feel that there were people out there who were willing to help couples, no matter how non-traditional they are, and what their problems were, to conceive, and to have a family.
So in the midst of all this pain and this struggle on all these different fronts, you know, I really did feel that we were lucky, that we did have a lot of support, and we found a lot of people to work with us, who were really rooting for us.
So I started, then, fertility treatments. And again, first I tried the oral medication and that didn't work. Then we had to go on to the injectables and that was so expensive.
What was the oral medication that you started with?
Wendy Williams: Oh, gosh.
Like Clomid, or something?
Wendy Williams: Clomid, yeah.
Dr. Kiessling: Clomiphene citrate, right.
Wendy Williams: Right. You can only do that for a few months, is that right? Is that right, Dr. Kiessling? That it's not something you're on for a very long period of time?
Dr. Kiessling: If it's going to be effective, it's going to be effective in a short period of time. It's really a matter of time.
Wendy Williams: Yes. So that was less expensive. My insurance covered some of it. We did the artificial insemination. My husband, though he wasn't positive, our doctor -- and I don't know if this is typical -- she did the sperm washing, as well. We had some of the sperm frozen, and some of it, we used fresh, depending on what was going on, sort of, with work and our schedules.
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