NAPWA

Ellen

I was in my mid-30s when I was diagnosed and I’d thought I was probably not going to have a child. To become pregnant was just the most wonderful thing. I’d always wanted a child and so it was like a miracle.

I had extremely good care when I was pregnant and during the birth. I have never been on treatment for myself, but it was recommended that I begin treatments after the beginning of the second trimester. I had no ill effects from any of them.

It was very difficult for me to start taking the treatment. It felt like if I started taking tablets it was admitting that I’ve got something. I did take them, of course, I had to do it.

I had a planned caesarean with an AZT drip. It was a very happy, positive experience. I couldn’t have been taken care of any better.

My daughter has had no adverse effects from the treatments. We were relieved that she was negative, but I was never very concerned. I was more worried that she might have Downs Syndrome because of my age, which was a greater risk as far as I was concerned. But she’s clear on all counts.

The most difficult thing was the fact that my mother was there the whole time and she didn’t know I had HIV, so I had to find excuses as to why I had a caesarean; why my daughter had to have this syrup [AZT]. It was so ironic to see my mother feeding the baby the syrup. We had it in a plain bottle and relabelled it. I also had to make up something about not breastfeeding, which was tricky.

People make an assumption that if you don’t breastfeed, you don’t bond with your child; but I didn’t feel any lack of bond or closeness. From a practical perspective it was great, because others could feed her as well. I never felt that I lacked in anything, or that she lacked anything. She’s a very healthy girl.

Andre

My partner [who was HIV negative] was in two minds about having children. We looked into it; we went to an IVF clinic. Most of the time we practised safe sex but we did have normal sex at times when she was open to having a child. She was fully aware of her situation. My viral loadA measurement of the quantity of HIV RNA in the blood. Viral load blood test results are expressed as the number of copies (of HIV) per milliliter of blood plasma. was undetectable and she was prepared to take the risk. Unfortunately we didn’t stay together.

I know other people who have just gone about it in the normal way. They have had a child and no-one has become infected.

Marie

When I was diagnosed in 1991, I didn’t think that I’d be here in 2003 and that I would have two negative children. The biggest issue for me was that I really wanted children, but there was no information about the risks to the baby or me. I just put it out of my mind, had lots of counselling. I couldn’t look at kids on the street.

Then in 1993 a friend gave me some information about a trial using AZT during pregnancy. That changed everything. At that time the chance of having a positive child was about 25% and with AZT it would be about 8%. I figured that was a 92% chance of things being fine.

My doctor was very supportive and my family were concerned, but seemed to be supportive. When I had my daughter, things started to spiral out of control. I had a dreadful labour, then I was put in a room with three other new mums who were breastfeeding their babies and my baby was whisked to the nursery because she was given AZT. They put a big yellow contaminated waste bag next to my bed. My family stopped coming to the hospital because they felt that we were being treated poorly.

I look back at that being the really pivotal time. I didn’t want to go through life being treated as a person who’s infectious, so I decided to do something about it. I got in touch with the hospital when my child was a few months old and was invited to speak at the midwives’ training. That was really empowering for me, and it was really good to see that people could change their attitudes towards HIV.

I also found out that my mother had had a family meeting about who would look after the baby after I died. I wasn’t invited. That was their way of coping. After my child was diagnosed negative, my family relaxed a little bit. They could see that I wasn’t going to drop dead straight away.

After seven years I finally got over a three-day labour and thought I could probably do it again. I felt very lucky that my daughter was negative and that maybe I shouldn’t risk it again, but I discussed it with my partner and became pregnant straight away. Both times we chose to just have sex and see what happened. We were aware that I had a very low viral load and that he was well and so on.

The pregnancy was a little more difficult, but I had a caesarean this time, which was fantastic. I went back to the same hospital, wondering whether things had changed in that time and they certainly had. It was a much, much better experience.

The reactions to my pregnancy this time were also a little different. I think that nearly nine years ago it was such early days that people didn’t really know what was happening, but now it was an empowered choice to have a child and we were making choices for our future as well. I’m really glad I’ve been left with this experience and not the last one.