This Month in HIV: Having a Baby When You're HIV Positive
The artificial insemination was done in your house, or in their office?
Wendy Williams: No, at this point, once I started working with the fertility clinic, I would go in, and I would have the inseminations in the office.
So was it intrauterine insemination?
Wendy Williams: Yes, it was the intrauterine insemination.
So they just put it inside of you and you just lay there for a little bit. Is that how it works?
Wendy Williams: Yes. It was funny. I don't know if you do this, Doctor, but our doctor would take the test tube of the specimen, and she'd stick it in her bra so that it would stay warm, it would stay next to her body. I don't know if that's common.
Dr. Kiessling: I don't think that's the first time that's happened!
Christa: I just also ... You know, you said that she did the sperm washing. I think the big difference is, Dr. Kiessling tests the samples. And if I had just gone to any lab where they actually -- I think sperm washing is a pretty typical procedure in in vitro fertilization. Right, Dr. Kiessling?
Dr. Kiessling: Yes.
Christa: So I think other places will do sperm washing. What Dr. Kiessling does that's different is that she actually will test the samples and make sure that they are negative for viral load. So, go ahead. I'm sorry. I just want to interject that.
Wendy Williams: Oh, no. That's OK. But you know, once we started going to her, I just really felt like we were in very good hands, that the procedure was going to -- that we had the best chance of success there. And we did the Clomid for a few cycles, and that didn't work. Then we went on to the injectable [fertility drugs]. Then there was a real significant jump in the cost of the procedure each month. I mean, I would need to go in for sonograms to make sure that I was ovulating -- you know, that I was at the right time -- and then I would go in for the insemination.
Do you remember how much it cost you, total, at the end? Or for any of these individual procedures?
Wendy Williams: I think that the insemination -- I guess because it wasn't as involved as what Dr. Kiessling is doing, with the testing and everything -- I think that was only between perhaps $100 and $200 per insemination. But each ultrasound was around $100. Then there was the medication. The Clomid wasn't too expensive, but the injectables were. It was a lot of money. I can't remember exactly.
The insurance covered some of it, but my parents covered a lot of it, too. I remember when we went from the Clomid to the injectable, I told my parents. My mother said, "If this is going to put us in the poor house, so be it. But you go for it. Keep going."
After awhile, we knew we would have to stop. I mean, we knew we couldn't just keep doing this forever. So we were getting towards the end of the cycle, of the number of cycles that we were willing to try.
Did you decide in advance how many cycles? What was the number?
Wendy Williams: We didn't. But we were getting close to a year at this point, of how many we had done. So when you talked initially about kind of the two years, that ... part of that was also when we had tried ourselves, and then when my viral load went up, and then getting it down again. So it wasn't two years of every cycle, trying.
But the second time around, once I kind of got over the shock of needing fertility treatments -- as I said, I was glad that we were going someplace where it was done in the office. We did have a sperm bank, where some of my husband's sperm was frozen. I remember taking a taxi over there, and picking up the sperm from the bank, making a little withdrawal, and sticking it someplace where it would be warm and rushing over to the doctor's office, and thinking, here I am in Manhattan, driving around in a cab with sperm in my pocket. The whole thing was so surreal.
But eventually -- and it was the last cycle, and we actually used fresh sperm for that one. We went to the doctor's office when I was ready. I had the vial of stuff. I brought it upstairs. I was inseminated. I just knew, from the moment it happened (I don't know how), but I just knew I was pregnant.
And I was, and from that time, it was a wonderful pregnancy. I just felt so good. I wasn't worried, because I had done all my worrying before. I was pretty confident that my viral load was undetectable, that we had done everything right. I was able to just enjoy my pregnancy. And that was a wonderful time in my life.
What year was this?
Wendy Williams: I was pregnant in 2000. I got pregnant in, I think, February or March of 2000. I had my son in December. It was just a magical time.
"It was so empowering to me to hear a healthcare provider saying that, 'Yes, you do still have the right to go out and have a child, even though you're positive.'"
-- Wendy Williams
But when I would go for my doctor's appointments -- this is not my pregnancy appointments, but for my infectious disease doctor -- I would be a nervous wreck, worrying if my viral load had broken through. That was the only time that I'd ever cheated. The nurse would come in and say, "OK. The doctor will see you in a few minutes," and she'd leave the chart. I would peek at my chart to see what my viral load was, because I was so scared, you know, that if my viral load became detectable, there would be an increased risk of transmission. Fortunately, during that whole time -- and afterwards, too; that regimen worked for a very long time for me -- but I was always undetectable. And I decided to do a C-section, an elective C-section -- which wasn't mandatory. Dr. Stein left that up to me, as to whether I wanted to do that or not. But I thought if it even decreased the risk of transmission by a tiny, tiny bit, that it would be worth doing.
So we did plan, I planned for an elective C-section. But I went into labor early. I was supposed to go into the hospital on the Monday to have the baby, and I went into labor, I think, either on the Saturday or the Sunday. My water broke. I didn't even know what it was, because I hadn't really read about that. You know, I wasn't expecting my water to break, and I didn't know what was going on. I was doing the laundry. You know, I couldn't figure out what was going on. I called my husband. He was out raking leaves. We rushed into the city, to the hospital. I was a mess. I was crying. I was so upset. Because it wasn't supposed to happen like that. I wasn't supposed to have an emergency C-section!
But that is actually what happened. Because we live outside of the city, we rushed into the city. And by the time we got there, Dr. Stein wasn't able to be there. She was out somewhere, where she wasn't able to get back. So I had to have another doctor do the C-section. It turned out to be a very nice man. I don't have much of a scar; he did a good job. But it wasn't the way it was supposed to be, and I was so afraid that my baby would be exposed during the delivery. So that was actually very upsetting, that whole thing, the way it happened like that.
But we got to the hospital relatively quickly. We got up there and within, I think, 15 minutes of being in the hospital, I had the C-section. My son arrived and they had to take him away because he had swallowed some of this meconium, I think they call it, in the fluid and he needed to be observed overnight. So it was a very scary time, immediately, in the immediate aftermath of his birth.
But then he came back to my room, the hospital room the next morning and he seemed to be fine. There were no lasting problems with that. And he was wonderful. I mean, he was a wonderful, beautiful baby, right from the start. But we did have to give him medication. We did six weeks of giving him antiviral medication as a preventative measure.
Is that still recommended?
Wendy Williams: I believe it is.
So you couldn't find out whether he was positive or negative at the beginning?
Wendy Williams: Well, no. I mean, not at the very, very beginning. He couldn't have an antibody test, because he would carry my antibodies.
What about a PCR [polymerase chain reaction] test?
Wendy Williams: They can do the PCR, but I think that they ...
Dr. Kiessling: For a low viral load, that's not as sensitive as an antibody test.
Wendy Williams: I think he had the PCR. I think it was -- gosh, I have to remember. You know, it was something like at six weeks, and then at six months. And at the six-month point, we got the final result that he was OK. Then I think at 18 months, he had an antibody test, just to confirm it.
Were you really, really worried the whole time? Or were you pretty confident that the chance that he was infected was very low?
Wendy Williams: I felt confident, but that whole thing that happened at the end, where he came as an emergency C-section instead of an elective, and he had been exposed to the fluids for some time; that concerned me.
But for the most part ... Dr. Stein said, "You know, you're a mom now. Just concentrate on being a mom. And don't think about giving him medicine because you're HIV positive. He's taking medicine because it's good for him. Don't let that upset you."
She gave me a tip for how to give him -- because it was liquid, you know; of course he had to have liquid medication -- she explained to me how to give him the liquid medication. Because I was resistant to AZT, AZT might not work for him. We also gave him ddI. And ddI, you know, you have to take on an empty stomach -- or you did at that point -- so I had a time when I could give him the ddI to when his feedings were. Of course, I didn't breastfeed him. I bottle fed him. I was very careful. I had charts. We had all these charts on a clipboard. OK, he ate at 6 a.m. and he took his AZT at 6:30, and now he can take his ddI at 8 a.m., and then he's going to eat a little bit later.
Sometimes he'd be hungry, and crying, but I couldn't feed him, because it didn't fit into his medication schedule, and that was hard. So during that six weeks when he was on meds ... and then he went a little bit longer on that on ... they give them Bactrim to make sure they don't get PCP [Pneumocystis pneumonia]. So even after I stopped the antiviral prophylaxis, I had to keep giving him the Bactrim. I think it was about six months.
Then I had to take him in for blood tests. You know, this tiny little body, to get blood tests. But thank God, you know, he tested negative. That was it, then. Then we had all the other issues of being new parents, and having a baby. But it was wonderful, and it was all very healing for all of us. And that was six and a half years ago. And he's doing great.
You mentioned before that you are careful who you disclose to, for fear that your son will suffer discrimination. Can you tell us about that?
Wendy Williams: Yes. I had been fairly open with my status. I worked in the field and, you know, as a positive, white woman, I really felt that I wanted people to know my story, and that it was possible for this to happen. I wanted to kind of be, as much as I could, an example, or warning, to other people.
But once we really started going forward with deciding to have a child, things kind of changed, and I was very worried about the stigma, and how it might affect him. I had seen it happen to other people who were positive themselves, or had positive children and I just didn't want to take that chance.
Plus, during this whole time, we moved out of New York, and moved to a suburb. I just wasn't sure what our neighbors, what the community, would make of it. So I decided that I wasn't going to be open about my status and I've stayed positive about it all these years.
It's hard for me. Because I feel it's something that I want to tell people about myself, that it's something very important that defines who we are and affects our lives -- maybe not on a daily basis, because fortunately, I'm not sick and I don't worry every day about it. But it's so much of who we are and why I do what I do. And I just feel like it's a big secret that I carry around with me that I'm afraid to. ... Because once you tell somebody, that's it. You can't take it back.
I see the gossip that goes on here about, you know, when a child gets lice. Everybody is up in arms about it. So God forbid they should find out that there is a family where the parent's HIV positive. I don't know what they would do. So I just keep it to myself. I still work in the field, and that's my outlet. But I don't tell any of my friends out here. Nobody out here knows it.
Do you think you'll keep it this way?
Wendy Williams: Yes. I've thought about it a lot, as to who I would tell and how I would tell them and every time, I decide not to do it. So, yes. I think I will. Certainly, at some point, I'll have to tell my son. Maybe after that we can decide together, when he's older, what we want to do, and if we want to tell people. But I feel like I can't now. He's still in kindergarten. There are so many years ahead of us out here.
Christa, are you feeling the same way?
You know, it's not my disease. I'm not the one who has it, but I'm living with it, and I'm affected by it. My husband has chosen not to disclose to anybody -- not even his family."
Christa: I'm like ... I'm just like, "Uh-huh, mm-hmm, mm-hmm." You know, it's not my disease. I'm not the one who has it, but I'm living with it, and I'm affected by it. My husband has chosen not to disclose to anybody -- not even his family.
For me, in the beginning, it was not only difficult trying to find a doctor to help us to move forward with this; it was hard to find a support group, or anybody to talk to about this. Because as much as it wasn't mine to disclose, I needed support. And I needed help in dealing with it.
I found one support group. And that's scary. Because I'm sure that that doesn't represent truly the number of serodiscordant couples that there are out there. And I think the secrecy, and the need for the secrecy, and the bias, and the ... it perpetuates the lack of support. Does that make sense?
I think there are more people out there that could use the support. But there's this fear and this shroud of secrecy that covers the whole situation. And it's unfortunate, and it's unfair. It's a disease -- just like having a treatable form of cancer is, or any type of viral condition. But it's sexually transmitted. It's not the only way that you can transmit it and there's a stigma attached to it. It's so unfortunate.
I'm also very much someone who is an advocate by nature. I'm someone who wants to speak out and talk about things. So it's very hard for me to have maintained this secret. I do it because, again, it's not mine to share. But it's been a struggle.
Again, I think it perpetuates this lack of information and lack of ... you know, it would be much easier to just be able to talk about it and be open and share information. Then maybe it wouldn't be such a struggle, and people wouldn't be so in the dark of what to do when the situation, and if the situation, were to arrive in their lives.
I think it also increases the chance of it arising because people think they are safe. And people think it's not going to happen to them. And it only happens to gays, or hemophiliacs. I mean, it's amazing, the lack of education and the lack of knowledge that's out there. I mean, we didn't know anything about it because it didn't affect us; we had to educate ourselves.
Wendy, one last question. Do you have any advice for a positive woman today who wants to get pregnant with a negative partner?
Wendy Williams: Yes. I mean, I would say that it's doable. The risk of transmission, if the woman's viral load is undetectable, is very low. It's down to one or two percent. So if that's what they want to do.
Dr. Kiessling: I think it's lower than that.
Wendy Williams: Yes. Yes. It shouldn't stop a couple who are happy together and want to have a family. I wish we had had a second child now. We were so happy, and it was such ... I don't know if it would have worked, because I would have been that much older, and still had the fertility problems. I think that whatever your dream is for your family, you should go ahead and find a way to do it. Because it's definitely possible.
Well, thank you so much everybody for an inspiring discussion!
All: You're welcome.
Click here to contact the Bedford Research Foundation.
Click here to e-mail Christa.
Click here to e-mail Wendy Williams.
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