This is Bonnie Goldman, editorial director of The Body. Welcome to This Month in HIV. Dramatic progress over the last 10 years in HIV medicine means that HIV-positive people can be expected to live an almost normal lifespan. With 75 percent of people with HIV in their reproductive years, this can mean only one thing -- many people want to have a child. Fortunately, there are more reproductive choices today than ever before, although they may be hard to find.
These choices mostly focus on mixed status heterosexual couples -- negative men with positive women, positive men with negative women. For gay male couples, however, things are still a little bit difficult.
To talk with us today about this new era of reproductive technology, we are pleased to feature three guests: an HIV fertility doctor and researcher, and two women -- one positive and one negative -- who have both successfully had negative children using reproductive technologies.
Our first guest is Dr. Ann Kiessling, Associate Professor of Surgery at Harvard Medical School and Director of the Bedford Stem Cell Research Foundation. Dr. Kiessling, who is not a physician, has a Ph.D. in biochemistry/biophysics. She has helped more than 40 couples affected by HIV safely deliver healthy babies, through the foundation's Special Program of Assisted Reproduction -- also called SPAR. The foundation's success has inspired other fertility centers in the United States to start SPAR programs. Dr. Kiessling is a widely published author and a noted researcher. She is also the mother of three daughters and a son. Welcome, Dr. Kiessling.
Dr. Kiessling: Thank you. Happy to be here.
Our second guest is Christa (not her real name). Christa is HIV negative and her husband of seven years is HIV positive. They conceived safely thanks to a combination of having her husband's sperm washed in a special procedure and then mixing the washed sperm with her egg in an in vitro fertilization [IVF] procedure. Dr. Kiessling's foundation did the sperm washing, but the couple flew all the way from the east coast to Arizona for the in vitro fertilization procedure. Luckily, Christa got pregnant on the first try. Today she is the proud mom of a four-year-old, HIV-negative son. Thanks for being here, Christa.
Christa: Hi. You're welcome. Happy to be here.
Our third guest is Wendy Williams (not her real name). Wendy is HIV positive and her husband is negative. Wendy safely conceived and delivered an HIV-negative son with the help of artificial insemination and fertility drugs. But her journey to motherhood was not as easy: She spent nearly two years going through insemination procedures and had to take expensive fertility medications in order to get pregnant, all the while struggling to keep her viral load undetectable. Her HIV-negative son is now six years old. She has worked as an HIV educator, writer and volunteer since 1993. Welcome, Wendy.
Wendy Williams: Thank you.
Dr. Kiessling, I know it has taken a long time to get fertility clinics to take on mixed-status couples for fear that they will be sued if a child is either born HIV positive or a woman gets infected. When did you first start taking on mixed-status couples, and how have legal considerations affected your work?
Dr. Kiessling: This program actually started with an editorial that I wrote in 1989 to a journal called Fertility and Sterility, and it seemed like a pretty benign observation that we were going to have to help people with HIV disease parent through assisted reproduction.
This came about because I had studied the HIV virus for a long time. At that time, there were concerns [about helping HIV-positive people parent], and those concerns persisted until about three or four years ago. The concerns were partly legal, but the other part of the concern was that the assisted reproduction laboratories were not really clear on exactly how to handle semen from somebody who was infected. I realized that if they could be provided sperm from specimens where the sperm was free of the virus, they would be more willing to go ahead and help couples who were in this circumstance.
So it was partly concerns that women might get infected with HIV, but the underlying concern for assisted reproduction clinics was that they didn't want anybody to know that they were helping people with HIV disease in their clinic. The other [concern] was that the laboratories were not equipped to handle the problem.
Why were the assisted reproduction clinics afraid to let anyone know that they were helping couples who were positive?
Dr. Kiessling: Throughout the late '80s, and all the way through the '90s, HIV disease was considered a very mysterious and scary disease. For business reasons, the clinics thought that [HIV-negative] couples were going to be uncomfortable if they thought that somebody who was HIV infected actually had their eggs and sperm in the same incubators as somebody who was not HIV infected.
Dr. Kiessling: Double wow.
What made you feel differently?
Dr. Kiessling: I understood the virus a little better -- a lot better probably -- because we'd studied this virus. We did the very first experiments to understand the burden of the virus in semen specimens in the early '80s, when I was still at the medical school in Oregon. So we had studied this disease for a long time. The virus is pretty fragile. We knew how to handle it -- how to inactivate it -- and we felt comfortable that this could be done safely.
What are the most common requests in your clinic?
Dr. Kiessling: Common requests?
From mixed-status couples. Is it negative women with positive men?
Dr. Kiessling: Yes. That's the most common. There are a number of clinics that can figure out how to help a woman who is HIV infected achieve a pregnancy, because we have become very successful at treating HIV disease in women. We know how to keep them on antiviral therapy and protect their offspring from infection throughout the pregnancy. There are a number of centers that know how to do that. So that problem generally doesn't come to us.
Do you find that the couples you have helped had a hard time finding you, or finding a clinic?
"What we have found now is that many of the assisted reproduction clinics that collaborate with this program don't necessarily want it widely advertised that they do."
\-- Dr. Kiessling
Dr. Kiessling: Yes, they did have a hard time finding us. Obviously, advertising and PR [public relations] is not our strong point. What we have found now is that many of the assisted reproduction clinics that collaborate with this program don't necessarily want it widely advertised that they do.
If the couple has not already organized a clinic, we usually have them come and talk with us. We figure out their geography and their timeline and their circumstances, and then we choose two or three clinics that we know will help them, as long as they are going through our program, so that the clinics themselves don't have to advertise this service.
It's astonishing that all this is so secretive! Is there still a fear that their other patients would find out that they are taking care of HIV-infected people?
Dr. Kiessling: I think that's less and less. I just think that they don't know how to answer the questions when people call. So it's much easier if they start out through us. We can answer the questions; tell them exactly what they have to do. In many ways I think it's a logistics problem with their office staff.
Can you walk us through all the methods an HIV-negative woman can use to get pregnant from an HIV-positive man? Please discuss the safety of each procedure, in terms of HIV transmission risk.
Dr. Kiessling: We hope the transmission risk is zero. Of course, there's no way to really guarantee that. The way this works now is, the man submits a semen specimen. We first of all make sure that he's in care for his disease. He has to convince me that he's serious about taking care of himself, that he's in the care of a qualified physician for his disease.
We don't have any particular clinical benchmarks. He doesn't have to have an undetectable burden of virus [i.e., viral load] in blood. I really leave that up to his infectious disease physician. But he has to be healthy, and he has to be serious about taking care of himself now. And the couple has to be serious about having safe sex.
Do you do the first initial discussion on the telephone? Or do you have to see the HIV-infected man or couple in person?
Dr. Kiessling: The whole process works best if we get to talk to people in person, because there's a lot that the woman needs to know.
She needs to realize she's taking a risk.
I like to encourage them to find out how the clinic plans to handle confidentiality issues.
I like to talk to them about how they plan to handle the diagnosis of HIV disease in the dad in the pediatrician's office, in the obstetrician's office. I really think this is a need-to-know diagnosis.
There are a lot of life details to go through. It all works better in person.
Under certain circumstances, if that's just a huge burden and they can't manage it, then we'll do a phone conference. But we sort of have a pretty hard policy now that if there's going to be a surrogate involved, they have to come in person.
"If we detect any virus, the sperm are discarded. It's not a matter of how much virus can you wash away. It's really a matter of using sperm from a specimen that wasn't exposed to virus to begin with."
\-- Dr. Kiessling
Once that is sort of established, and we have some guidelines about his disease status and the care he's under, then he submits a semen specimen to the laboratory. The sperm from that specimen is cryopreserved and the rest of the specimen is tested for virus. If we detect any virus, the sperm are discarded. It's not a matter of how much virus can you wash away. It's really a matter of using sperm from a specimen that wasn't exposed to virus to begin with.
We actually still don't know where in the male reproductive tract HIV arises. We're sure that the sperm themselves are not infected. They are exposed to virus by some of the other fluids from the reproductive tract that are part of the semen specimen. Since we don't know exactly where it comes from, each specimen is pretty unique. I worry just as much about infected cells as we do free virus particles.
What's measured in the bloodstream is free virus particles. That's an RNA burden that's measured. However, I think for semen transmission, a more dangerous form and infectious form of the virus is its virus-infected cells in the semen specimen. So we do this research, this sort of complicated research assay, that we've done for a long time. That assay detects both free virus particles and virus-infected cells in the semen specimen.
If we don't detect any virus in that specimen, and those sperm have already been washed, then those are sort of checked off, and those are eligible for use in assisted reproduction. [To view illustrations of the sperm washing process, click here]
What do you mean by "washed?"
Dr. Kiessling: Well, when the semen specimen comes into the laboratory, you have to recover the sperm away from the seminal plasma, away from all the fluid part of the semen -- and away from the transport medium that was used to ship the sperm, if it was shipped overnight by carrier.
In that process, the sperm themselves get -- you know, everything gets washed away from them, so that what's cryopreserved has already been washed. Then the sperm are frozen in a special way that keeps them alive when you thaw them out, and they are stored in liquid nitrogen. It's sort of standard sperm banking practice.
As a result of the freezing, are the sperm less fertile?
Dr. Kiessling: Not all of them survive the thaw, but for a healthy guy with normal sperm, well over 50 percent of them will survive this procedure, and they are stable in liquid nitrogen for quite a long time. I think we store them for two years.
Then what happens?
Dr. Kiessling: Then, it depends on the couple. It depends on her age, and it depends on the sperm count, whether we recommend in vitro fertilization (IVF) or whether they are eligible for a simpler procedure, which is called oligospermia cup insemination.
Now, in vitro fertilization is a little more invasive, although, for a woman who is over 35, it's going to take her a shorter time to conceive, probably, if she goes through in vitro fertilization. That's the most popular method with most of the infertility clinics that are helping us.
But about five years ago or so, we were contacted by a couple of physicians who had been taking care of HIV-infected women, some perinatologists. They really encouraged us to come up with a less invasive and less expensive way for people to have children with tested sperm.
We were very reluctant to use a procedure that is more common in infertility clinics, a procedure called intrauterine insemination [also called IUI]. There's a big program, I think in Italy -- and perhaps one in England -- that uses this procedure.
I'm reluctant to do intrauterine insemination, for a couple of reasons. One: our Centers for Disease Control and Prevention in Atlanta, Georgia, have on their books a white paper that says that they don't think this approach has been proven safe. The other reason is, I worry so much about these infected cells, which are very difficult to detect. You have to use up almost a whole specimen to be able to detect these infected cells. For those two reasons we were reluctant -- or, actually refuse -- to use washed sperm for intrauterine insemination.
The cup insemination procedure is less invasive. It is well established. It's a very old method; it's been around a long time. It was originally designed for couples when the male has a low sperm count. In that procedure the washed and tested sperm are placed in a plastic device that sits very close to the cervix. Only the sperm can swim through, avoiding the risk of putting an infected cell directly into the uterus. Those are the two options.
How long does this cup have to stay in place?
Dr. Kiessling: A couple of hours.
The woman stays in one place for a few hours?
Dr. Kiessling: No. She can walk around. It's very similar to wearing a diaphragm. I think most women don't even know it's there.
Do they go home with it?
Dr. Kiessling: They go home with it. That's right.
Research suggests that HIV virus replication is compartmentalized between blood and semen. Thus an undetectable viral load in blood may not indicate an undetectable viral load in semen. Similarly, treating HIV in blood may not treat HIV in semen.
And then they can take it off themselves.
Dr. Kiessling: Yes.
Do you coordinate this with her menstrual cycle?
Dr. Kiessling: Yes. You have to do this exactly at the time she's going to ovulate. We still do that procedure here in Boston. We also now have a couple of collaborating clinics -- one in Florida that's willing to help us with that; I think the other one is in Washington, D.C.
But most clinics have not used the approach of oligospermia cup insemination, once assisted reproduction became a specialty. The cup insemination is really more well known to gynecologists than it is to fertility centers.
We had somebody just get pregnant last week through this method, though.
So, are there other methods?
Dr. Kiessling: No. Those two.
I understand that you used to offer in vitro fertilization, but now you don't. Do you refer people?
Dr. Kiessling: Yes. We refer people. We only offered IVF until we could find a few clinics in various parts of the country that were willing to help. Some people don't want to go through assisted reproduction in their local community for confidentiality reasons. So for a while, we offered IVF just to those couples who were happier to come to Boston than to try to find a clinic at home. Now I think we're up to about 26 or 27 collaborating infertility centers. It's much easier now for us to find help.
Great. Christa, you were Dr. Kiessling's patient?
When did you first decide you wanted to have a baby?
Christa: Before I married my husband. About, I would say, a year prior to making the decision we were going to get married. I never really wanted children and he always did. I decided that he would be a great dad and that I would be willing to have a child.
You know, it's a big thing for me. Two weeks after we had the conversation, he was found to be positive for HIV. It was really devastating for both of us. It was before we actually got married.
At the time, we didn't know anything about anything. We thought it was a death sentence and we were scared. It was a process. It took time just getting educated and getting him started in [HIV] treatment. It wasn't long after he was in treatment and his viral load had come down -- it was actually undetectable at that point -- that he had asked one of his doctors at a clinic that he was being treated in if he knew anything about how someone in his position could have a child. This was after talking to a number of other doctors and people, and just hearing, "No, no, no, no, no."
This doctor threw out the term, "sperm washing." That's all he said. He said he heard of something called "sperm washing," and that there was some success with that. At that point, I started scouring the Internet every night for hours, searching and searching and searching -- and really was coming up with nothing. It took, I don't remember exactly how long, but I want to say weeks and weeks.
What year was this, when you started?
Christa: I think it was -- and Dr. Kiessling might know better -- I think it was back in '98, maybe?
Dr. Kiessling: Yes, it might have been. Or '99.
Christa: Finally, I found a little article that referenced -- at the time it was Duncan Holly Biomedical -- and then it took me a while to actually find that. I think I found Duncan Holly, I actually found a link to Dr. Semprini, who is the doctor in Italy that you were talking about.
They were doing this procedure that Dr. Kiessling had mentioned -- I'm sorry, I don't know the technical term for it -- pretty successfully without any seroconversion over there. But going to Italy really wasn't an option for us at the time. You know, just financially, from a time constraint ... We would have if that were the only avenue that we had ended up finding. But I found the link to Duncan Holly and then I started to pursue that, just because it was closer to home.
Were you ever afraid of the risks to you or your child?
Christa: Honestly, at the time, my husband was probably more afraid than I was. I knew that even in Italy, using a procedure that wasn't deemed safe by our standards, that there wasn't any [HIV] conversion in people that were following a certain protocol. It was knowing that they were taking the extra step and washing sperm, and that there hadn't been any conversions. I knew that we were both responsible, and we would follow the protocol exactly as directed.
So no, I never believed that I was at risk. Really, in my heart of hearts, I didn't believe it. I'm sure my husband went through a little bit more fear over that, as he was the one who was positive and at risk of infecting me. But I didn't believe it. If I had, I don't think I would have. ... Well, you know what? I weighed the risks, and in my heart of hearts, I didn't believe that it really was a significant risk. And I was willing to take it.
Did you call different clinics? Did you just decide to call infertility clinics just to see if they would take you and your husband?
Christa: Well, I had to call around. One step that Dr. Kiessling didn't mention is, before we actually did the sampling, I had to go for a series of tests and blood work, and my husband had to go for blood work, as well, and send those results over to Boston. Then, if all of that checked out, then I went for -- I forgot -- what's the name of the test when they put the dye in and they look at the fallopian tubes?
Dr. Kiessling: A hysterosalpingogram.
Christa: Yes! I had to do that. So there was some testing done first, just to make sure that all my hardware was working, before we went through everything.
Dr. Kiessling, is that done with every patient that you take?
Dr. Kiessling: That really depends on the infertility clinic. Some clinics require that, and others don't. I think the clinic in Arizona required that.
Christa: Right. Also, I was an older potential mom. There were some other factors.
What does "older" mean?
Christa: I was in my late 30s. I was 35, I think, when we actually started the whole process, or 36, 37 when I conceived my son, and 38 when I had him.
So these tests are necessary when you do IVF, but are they necessary when you do something different? The cup method?
Dr. Kiessling: It really depends on the clinic. The Italian program required a lot of tests because they were doing intrauterine insemination. IVF programs don't always require all that testing if they can do a sonogram and just look at the ovaries by ultrasound and make sure that everything looks OK. If they suspect that there is any kind of inflammation going on or anything, then they require more testing.
Christa: In our case, when my husband had the blood work done, he actually had low motility, poor morphology, and low mobility -- which basically means, in English, a low sperm count. They weren't swimming too good.
U.S. Clinics That Help HIV-Positive Men Have A Child With HIV-Negative Women
Unfortunately, many fertility clinics are still reluctant to advertise that they help HIV-positive people have children. But whether you?re an HIV-positive man with an HIV-negative woman or an HIV-positive woman with a negative man, a growing number of fertility clinics in the U.S. will help, although few insurance policies will pay for this and it can get costly.
Since there is no comprehensive list of U.S. clinics that will help HIV-positive people, to find a clinic in your area, you?ll simply have to contact them all. The Special Program of Assisted Reproduction (SPAR) which is a program of Bedford Research Foundation, does sperm washing for HIV-positive men who want to have a baby with an HIV-negative woman. They have a list of fertility clinics across the U.S. that they will work with as well. The following is a sample of their fees.
Costs From Special Program of Assisted Reproduction (SPAR)
A program of Bedford Research Foundation
Initial Consultation with Dr. Kiessling
There is a $300 program initiation fee which is $450.00 included in the initial consult fee.
Semen Analysis and Sperm Cryopreservation
If the sperm count and mobility are within normal limits, the specimen will be tested for viral burden. Two undetectable specimens must be collected before attempting an infertility procedure.
Sub Total (per specimen) $870.00
Total (for 2 specimens) $2,190.00
Analysis of specimen for assessment of infertility and viral issues. Freezing to keep alive.
This is a monthly fee per specimen. There is no charge for the first month of specimen storage. Specimens can be shipped to any cooperating clinic. A consent form and 30 days notice is required.
Specimen Shipping $425.00
Specimen Storage $25.00
Christa: Yes. And they weren't formed that great. So in our case, we did a procedure called ICSI [intracytoplasmic sperm injection] -- Dr. Kiessling can tell you technically what that is. But you take one sperm and you inject it right into the egg, and you fertilize the egg outside. And then you translate the egg back in.
Is that why you decided to use in vitro?
Christa: Yes. Well, that was the major determining factor for us. I checked out OK. My egg counts were OK, even for my age. But it was the sperm that wasn't great. So even if my husband was HIV negative, we may have actually had to do this for me to successfully get pregnant. Do you know what I mean?
So what was the in vitro fertilization procedure like? Your husband had to do the sperm wash, and he did it with Dr. Kiessling?
What did you have to do?
Christa: I had to start on a number of medications to actually control my cycle, and to kind of manipulate my body into thinking it was going through a pregnancy cycle. Dr. Kiessling, please jump in if I'm not explaining this correctly.
Dr. Kiessling: That's right. The clinic takes over your menstrual cycle that month so that they can try to get your ovaries to mature multiple eggs, instead of just one.
What were the medications?
Christa: I don't remember, honestly.
Dr. Kiessling: There's one possibility. It could have been just birth control pills.
Christa: No. For us it was definitely more than that. I was taking a lot of medications. I was actually taking injections.
Dr. Kiessling: So it was probably Lupron, then.
Christa: Yes. They were actually able to pretty much pinpoint when I was ovulating. I had like 48 hours from the time I went to the lab that was working with us here to get to Arizona, once they saw that the follicles were a certain size.
You had to really have -- for us, anyway -- flexibility in your schedule, to be able to kind of just go when we were ready to go. We also had to find ... For us, we didn't want to spend the whole two weeks in Arizona, waiting for that process to happen. Again, from a work standpoint, time and money -- all of that.
So I had to find a fertility kind of lab -- or just the place where they maybe do the procedures, but also do the blood work. A place that was willing to just do the blood work piece for us, and to draw the samples and look at the numbers, and fax them over to Arizona without actually doing the procedure.
Even that, at the time -- I just got on the phone with an open phone book in my area and was asking, insisting that I not talk to the nurse and that I needed to speak to a doctor, for confidentiality reasons. It took me about 20 phone calls, speaking to different labs, to find one that was actually willing even just to take my blood, and to get the results over to Arizona. That's how much of an issue that you can face dealing with this. I mean, I wasn't asking them to actually do a procedure. It was just to draw the blood and to send the test results over to Arizona.
So you had to be very determined to go through all this.
Christa: Oh, yes. Oh, yes. I mean, it was definitely something that I set out to do and I was determined. If there was any way to make it happen, I was going to do it.
I understand you had some difficulty getting the first sample of washed sperm shipped.
Christa: Oh, Baby X got mishandled by Federal Express. And we were joking around. I think it was our first. It may have even been our second sample, but I think it was our first. We had actually shipped it out. We drove all the way into the city -- I won't say what city -- but into the city, to get it out for a Saturday shipment so that it would arrive on Saturday.
We had to find a FedEx that was open late in the evening. And we got it over there. We paid extra to have a Saturday delivery. I was so explicit, and I went over it with the person a hundred times. Dr. Kiessling's lab never got it on Saturday; it got there on Monday.
It was so emotional for us. Because it's not just like they lost the package. It was the whole getting the sample from Boston -- or the package from Boston -- having to collect the sample. You know, you're like a little scientist, mixing things in a lab, getting everything ready. Packing it, sending it out. You know, potentially, this was our child. My husband was devastated. He was so upset. And ... just the time involved, and even just scheduling.
Because on Dr. Kiessling's end, on the lab's end, they have to schedule you. There's a very specific timeline. Someone's going to be at the lab there to take the sample. You could speak more to that, Dr. Kiessling. You know, to make sure that you're not just shipping the sample out, willy-nilly, at your whim. It has to be scheduled.
Dr. Kiessling: Right. The lab is staffed to handle those, I think, three days a week.
Dr. Kiessling, tell me how this all happens. Christa and her husband had gone to Boston, and seen you. Then when it's time to ship the sample, they're at home, and they just send you the sample. Is that how it works with everybody?
"If we detect any virus, the sperm are discarded. It's not a matter of how much virus can you wash away. It's really a matter of using sperm from a specimen that wasn't exposed to virus to begin with."
\-- Dr. Kiessling
Dr. Kiessling: It can. Some people prefer to come to Boston. The lab has organized a sperm kit. A lot of ways of managing sperm were worked out 50 years ago, for dairy bulls, for very expensive bulls on dairy farms. So we know how to keep sperm alive for quite a while.
We understand this from bulls?
Dr. Kiessling: Yes. We understand this from bulls. That's right. So this kit has in it different parts. We need part of the specimen put in one condition so that we can test it for HIV in one way. And we need another part of it put into another condition so we can test for HIV a different way. Then the remainder is put in the stabilization medium so that all of those sperm can be washed and frozen. The easiest way for the patient to do that, actually, is in the privacy of their home.
For the most part -- although it's kind of a complicated procedure -- for the most part, once the patients have read through the instructions, nobody almost ever complains, and it's almost never messed up. So this is sort of one of those ... you know, if you can make a complicated dish in the kitchen, you can handle this. It's just that the beginning looks a little formidable.
I think that the wives probably have a major role in getting this done and packaged up, and sent off to FedEx. I don't think this is a guy thing. But it works, and it saves everybody a lot of travel. The solution that's used to support the sperm has been tested for a long time. We know that the sperm are very viable in this.
Then once the sperm sample gets to your office, the couple can come and do the next procedure anytime, right? Because once it's frozen ...
Dr. Kiessling: Yes, that's right.
Could they wait a year, or two years?
Dr. Kiessling: Yes, that's right -- once it's cryopreserved. Now we really insist that each couple have two specimens cryopreserved, because we know that the woman is going to go through something before -- she's either going to go through monitoring for the cup insemination, or she's going to go through hormone injections for IVF. And it doesn't make sense to then have all of this based on one semen specimen. And if those sperm don't wake up well, then she's gone through a lot of effort. So we make sure that they have two specimens in the liquid nitrogen tank before they go through an infertility procedure -- really, just to protect her.
So are there sperm samples shipped at one time, or shipped separately?
Dr. Kiessling: No, no. They are shipped all at once. They can all be shipped to the clinic at once. Some clinics are willing to store what they don't use; other clinics want to send it back to us for storage.
Christa: And there is a charge for storage. I just want to throw that out.
Dr. Kiessling: Yup. There's a fee for storing it, mostly so we can keep track of people. But shipping frozen sperm around the world is really very common. That part of it is well worked out. I don't think we have ever had a problem doing that. We do occasionally have problems with Saturday deliveries, I notice. But many people really want to collect a semen specimen on Friday, so we maintain that Saturday time slot.
Christa, why did you choose to go to Arizona for IVF?
Christa: For us, it was more of a financial issue. Also, once we met the doctor, there was a personal piece to it, as well.
Dr. Kiessling: We didn't have very many collaborating clinics at that time, did we?
Christa: No, not at all.
Dr. Kiessling: Right. The Arizona clinic has been with us a while.
So this was through Dr. Kiessling that you found the clinic?
Christa: Yes. There was also a clinic in New York City at the time that's still up and running. They did not accept our insurance. It actually cost less for us to stay in an extended stay suite, with a kitchen and everything, in Arizona -- it was very inexpensive, actually, in the area of Arizona that we had gone to -- and have the procedure done and fly out.
Because we were able to use frequent flyer miles, it just kind of worked out that it actually cost a lot less for us to do that than it would have been for us to pay, and only have insurance cover whatever the percentage was, or nothing, if we were paying ourselves for the procedure.
The procedure itself, when we got the price list from both places, it was actually less expensive in Arizona. I guess because everything in New York is more expensive.
What was the cost? Can you tell me?
Christa: I know that our insurance plan at the time covered up to $10,000 for a lifetime, for basically -- I don't know what the overall term is -- I guess fertility treatments. Going to Arizona, we would have had money available to do it again, a second time, if it didn't work the first time. So I don't have an exact, down-to-the-penny figure, because you have to figure it also covered all the drugs, all the injectables, the procedure itself, the follow up ... all fell under fertility treatment.
So when all was said and done it probably came out to about $5,000, give or take. Because like I said: we had money left over, that if it didn't work, if we had gone to Arizona again, we probably could have covered most of it under insurance at the time.
Dr. Kiessling: The range for IVF treatment is anywhere from $6,000 to $15,000, depending on the clinic.
Christa: Well, yes. Keep in mind, also, this was back in -- how many years ago was it now? Like, five, six years ago. So even in that time, I'm sure things have gone up.
Dr. Kiessling, what is the cost at your clinic for the sperm washing?
Dr. Kiessling: I think it probably has gone up. For the testing, the cryopreservation, and the storage. I should have looked that up. But I think it's about $700 or $800 per specimen.
And that doesn't include the procedures that will be done to the woman?
Dr. Kiessling: That's right.
That's an extra. Do you have a ballpark figure?
Dr. Kiessling: Well, it really depends on what infertility clinic they are going to. As I said, I think the range for IVF is anywhere from $6,000 to $15,000, depending on the clinic.
Right. But what if they're doing the cup?
Dr. Kiessling: The cup procedure is much less expensive, and frequently covered by insurance. That's just a few hundred dollars for monitoring the blood hormones and doing ultrasound exams.
Is that something your clinic does?
Dr. Kiessling: We don't do it on location. We have a gynecologist right in the Boston area that helps us with that. Yes, we do do that here.
OK. Well, Christa, do you have any advice for negative women today who want to get pregnant with positive partners?
"I basically equated it, when we were going through it, as just any couple that was struggling to conceive. I wasn't so much thinking of us as an HIV-serodiscordant couple anymore, because what we were going through at that point was no different than what, I'm sure, millions of people do, in this country and around the world, trying to conceive a child every year."
Christa: I would just say to stay hopeful, and to do your research. And to definitely call Dr. Kiessling's facility, if possible. I mean, we did this five years ago. I'm sure now it's even easier, because there are a lot more facilities that are actually willing to work with couples in that situation.
Dr. Kiessling: Baby No. 62 was just born last week.
Christa: I personally know two people who have had success after us, through the recommendations of Dr. Kiessling, and then the different facilities. At the time, I couldn't find an iota, a shred of information even, on the Internet. It took forever. Now I personally know two other people. So it's really encouraging to me to know that it's getting easier. Because I don't want anybody to have to go through ... it was so devastating. It was like a death sentence -- not so much for my husband, but just that that was it. We had no hope for the future of having a family. And that's not the case. That's not the case.
So it was well worth all of the effort?
Christa: Absolutely. Absolutely. I mean, once the grunt work was over. You know, I basically equated it, when we were going through it, as just any couple that was struggling to conceive. I wasn't so much thinking of us as an HIV-serodiscordant couple anymore, because what we were going through at that point was no different than what, I'm sure, millions of people do, in this country and around the world, trying to conceive a child every year. I stopped thinking of us as a serodiscordant couple because I really wasn't worried about it at that point. I was really more just hoping that the procedure was successful.
Dr. Kiessling: I don't think we have any recent pictures, Christa.
Christa: Oh. I'll have to get some out to you. I will, I will.
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:
She has to make sure that she's in good care and
that she has an undetectable burden of virus in her blood [i.e., an undetectable viral load]. And what we actually understand about this virus is that if the egg is infected very early with the virus, there really isn't a pregnancy. It's a very active infection, and so you don't have a baby.
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.
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.
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