Annemieke (47) is the mother of Allard (11). They are both HIV positive.

How long have you known that Allard has HIV?

Since he was two and a half years old.

How did you find out?

I was pregnant with his little brother and the blood tests showed that I was HIV positive. So then my husband and Allard had to be tested as well. My husband wasn't, but Allard turned out to be HIV positive.

How did that feel?

My whole world came crashing down around me. The first reaction is the image that you have of Africa, that you stand no chance of survival. After that you look at how to move forward. What about the pregnancy? What is the risk to the baby in your tummy? These were our concerns.

Do you have any idea how you contracted it?

I had contact with a South African here in the Netherlands. He took advantage of me at a vulnerable moment, I was mentally very vulnerable at that time.

Was your husband upset?

Yes, it was a very long time before we had intercourse again and even then it was very limited. He always said that he wouldn't desert me. If he'd said back then that he was leaving me, I would have understood. But he has always remained faithful to me.

What happened next with your second child?

I started taking medication immediately. After the birth, Just was given a blood test and turned out not to be infected. I wasn't allowed to breastfeed him. For the first month of his life, he was on a very strict feeding and medication regimen. A feed every three hours and a type of drink every six hours. A month later, I was able to stop this. In the meantime, he was constantly having blood tests. After a year and a half he was still negative.

Allard was two and a half when he was found to have HIV. Had you ever noticed anything wrong with him before that?

No, he was often tired, but when he was a year old, he had an umbrella-shaped device inserted via his groin because he had a hole in the wall separating the chambers of his heart (ventricular septal defect – VSD). The blood was being pumped by the heart but was not moving sufficiently around the body. They discovered it at the health clinic and the cardiologist in Amsterdam fixed the problem. Just when you think it's all over, a year and a half later you find out that he has HIV. That wasn't discovered during this procedure. And there were no indications that there was anything wrong with him. It really was a bolt from the blue.

Did he have to take medication immediately?

He started with drinks right away until he was old enough to take pills. At the hospital we learned how to administer the medication. It's all going well now but in the beginning it was a real drama. We gave him the pills with custard but he spat them out and then we had to start over. He started out with eight or nine pills, but now has just two. He does it all by himself and it's going well.

You told him at a very young age about his condition, why was that?

He said himself that he was four, but I don't think he was. I had already explained to him what the medication was for, but not that it was for HIV. You can't keep things hidden from Allard. He wanted to know what it was for and why he had to take it. I think he was six years old. In that book about the dragon there was a lot about what you do and don't tell people.

Did he ask questions at that time?

No. But when he was a bit older he asked what the HIV was actually doing to him now. At that point we explained to him about resistance, about how it is decreasing, which means that you may then get sick quicker. Then he went off to play again. That was enough. He didn't want a to talk about it at length. It's a bit too close to home. He knows there's a taboo surrounding it.

Who did you tell?

We really struggled with that issue. We thought that everyone had to be told and there was also a bit of fear involved. We didn't really have a choice. At that time, we had to tell everything because imagine if others became infected. So I had to tell the minister at our church for instance. At kindergarten, the teacher was taken aside by someone who had heard via the church. There was a lot of hype about it. People who we thought didn't know about it and who didn't even go to our church had heard on the grapevine that they had to watch out because we had HIV and had heard all about how it had happened. There was an awful lot of gossiping.

Were things difficult at school as a result?

The nurse held an information evening at school for the teachers. That did bring some calm to the situation but it was not how we had wanted it to be ourselves. She also had a book with her called 'Learning positively'. It included a section by us along the lines of 'if only we hadn't told people'. It was about how people reacted, that I had slept with every Tom, Dick and Harry, and so on.

Has Allard experienced any disadvantages as a result?

He was once playing at a friend's house. One of the parents came to us to say that their child was not allowed to play at our house. It was okay for Allard to play at their house because then they could keep an eye on him. At the time I reacted differently, but now I'd have said that if their child is not allowed to come here, then Allard is not to play there either. He now has a group of friends and a best friend. His friends' parents know, I'm not sure if the friends themselves know. They occasionally ask if there's anything they need to be aware of regarding the medication. He has a watch with an alarm so he knows when to take it. Then he asks the friend's mom to help him.

How do you think that's affecting him?

He has braces and one day he had to have two teeth taken out. He was supposed to go camping with a friend but he suffered bleeding afterward. I didn't want to burden the parents with that and said that he couldn't go. At the time, he was angry and said that the dentist had ruined his whole May vacation. He was so keen to go, so it did hit him really hard. He understood why, but he was in tears.

How much do most people in the Netherlands know about HIV?

Very little. People have the image of Africa, which is really focused on children who grow up alone. I see that in the media as well. People don't understand the risks. You can't catch it by drinking from the same cup, but if you have intercourse with someone then you can. Anyone who has looked into it properly knows that. They also have a much better understanding. People react in a very basic, primal way. HIV, you've got to watch out!

Do you worry about him?

Yes, when I think about the future, a mortgage, that can be quite difficult. We own a house ourselves, but it's in my husband's name. I didn't have to be tested. I was a co-signatory. That is certainly a worry. And taking a trip to Canada or America. I know you can go a while without medication if it's reasonably under control. Then you can choose not to say anything and go to America for two weeks without any medication.
It's a trade-off whether to tell them or not. If you didn't tell, Allard would have a carefree time for a while. I don't want to deprive him of opportunities.

How do you think Allard is doing?

He's a wonderful boy. You can have a good conversation with him about all sort of things. In the evenings we read from the bible and that raises questions. He has often considered it differently to me. On Sundays we always have time for playing and romping around with the kids. That's when we have bonding time. But once it came out wrong and I said bonking time. Allard was in stitches because he had just had sex education. He still has that light-hearted side.

Do you worry about the adverse effects of the medication?

No, that applies more to me. I take a combination of medications, which gives me a higher percentage of fat. I also go to a dietitian. In addition to that, I take other medication for my health. I gained two kilos within a month. The medication stimulates a feeling of hunger, which causes you to gain weight.

Do you worry that will happen to him as well?

Maybe eventually, but he is very slim, he can afford to gain a few pounds. He eats well and he's growing tall now. My husband is also very slim and he has his build.

Has he ever asked how you contract HIV?

He knows that he got it when I was pregnant with him. That I didn't know I had HIV back then and wasn't taking any medication. That question will probably come at some point, he'll want to know why he has it and his brother doesn't. I sometimes worry that he will blame me or ask more questions.

Do you have any tips for other people?

Think about it carefully before you tell others that you have HIV. I had to learn this the hard way. If someone wants to know something, come and ask me. Ask in person what you need to be careful about. We understand that it's hard, it's the unknown. You see images from Africa that are horrible, but don't gossip, don't make up your own story. Come and ask me.