Mothers who have passed the HIV virus on to their child often feel very guilty. They did not know that they had HIV, otherwise they would of course have taken medication to avoid infecting their child. Some children want to know from their mother how they contracted the virus. But not every child needs this sort of conversation. It often has to do with the culture that you come from, or how openly HIV is spoken about at home.
Fortunately, since 2004 all pregnant women in the Netherlands have been tested for HIV. Thanks to medication, the chance of HIV being transmitted from mother to child is now less than one percent. However, in many countries of the world, this test is unfortunately not performed.

Linde Scholten (30), child psychologist

The mother's sense of guilt is a very difficult subject. A lot of mothers who are infected with HIV themselves and then became pregnant, don't talk about it. It's hidden away. But it's a major wound. It can affect the relationship with the child and that's not good. But it's not the mother's fault, nobody wants to contract this virus.

Dasja Pajkrt (46), pediatrician specializing in infectious diseases

Mothers in particular have that sense of guilt because they were often also infected with HIV. For convenience, you could sort the HIV-infected parent or parents into different categories: parents who are more open and openly want to guide their child, and parents who themselves find it hard to deal with the HIV infection. The open parents are actually kind of buddies for their child. They talk openly about their own illness and discuss their child's problems openly as well, which is helpful for the children. The parents who find it hard don't just feel guilty themselves but also have a sense of guilt toward their children. They don't talk about the HIV infection at home and often pretend it doesn't exist at all. Even though they put on a brave face in the consulting room, there are often a lot of problems going on at home that we don't always hear about, which is a shame. The dialog between the parent and child or between the parent and the doctor then remains a bit more difficult.

Henriette Scherpbier (59), general pediatrician

Many mothers feel guilty about the fact that their child is infected. In many cases, they didn't know that their partner was seropositive and they got the virus without knowing it. You don't have that problem with adoptive parents. It's different for them. They also don't feel stigmatized, which mothers with HIV have to cope with.

Naomi (16)

Am I angry with my mother because I got it from her? Initially, I was very angry that she hadn't told me earlier. But she had to make a promise at the hospital not to tell me until I was eleven, because that would be a good time. When I found out, I really panicked. I blamed her and completely shut down.
I am not so angry anymore and have accepted it a bit, although not yet completely.

Joyce (20)

Does my mom have a sense of guilt toward me? I think so. In the beginning she found it hard with me because she felt that it was her fault. She also found it hard that I wasn't allowed to be breastfed. She always thinks that it's her fault. But it's my dad's fault. He should have been honest and got tested.

Jane (45), mother of Ashley (15), both have HIV

I was really dreading the day that Ashley had to be told. How would she react? Would she blame me? Would she think I was a dirty slut or something? I had all kinds of reservations. But the conversation went extremely well. We had prepared her by telling her that she had a blood disease and that she would hear more about it at the hospital the next day. We didn't mention the word HIV. First we had a conversation together, my consultant was there and so was her consultant. Then we left for a moment and she stayed alone with the consultants. It was a long and intense conversation. Everything was explained, with us there and the consultants. It was perfect. We made another appointment for a few days later in case she had any questions, but she didn't.
No, she didn't change her mind. We often asked her about it, but she didn't have any questions. Well, once she wanted to know what HIV means. The abbreviation that is.

Ashley (15)

I've never been aware of my mom feeling regret for passing on HIV. But I've never asked her. I can talk about it easily at home, but just not when my little sister is around. She's only ten. She'll be allowed to know when she's older.

Maureen (16)

I knew my biological mom. I didn't hear she was sick until after her death. I still have a vague picture in my head of my mom. In the Netherlands I was immediately placed with a new family. Am I angry because I have it? No, I'm not angry. I don't know how it happened.

Annemieke (47), mother of Allard (11), both have 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. The question as to how he got it 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.

Marjee (18)

When I found out at sixteen that I was HIV positive, I was able to talk about it at home. My mom expected me to react differently. She thought I would be sad or angry, but that wasn't the case. I think my mom thought it was better to tell me a bit later. I haven't discussed this with her. After my dad died she told me. He also had HIV. He died in Rwanda. She thought that was a good time to tell me I think. Did I ever ask her before that what exactly was the matter with me? I think I did ask and she was worried that I really wanted to know. Also after what happened to my dad.

Thea (49), mother of Gerald (14), both have HIV

My two sons have HIV but my husband doesn't. That was good news for him, especially because he's a Kenyan. A black man. But the fact that I've given my children this illness is the worst thing that can happen to you as a mother. I didn't know, and even during the pregnancies my blood wasn't screened. There was no reason to. The eldest was born in Kenya. He wasn't tested in the Netherlands either. That was a shock. It's easier now because, fortunately, the children are doing well and coping with it well. But every time they have to go for a check-up, the youngest is terrified of needles, so it breaks my heart again. Have my children asked about it? No, and I haven't actually explained it clearly either. But one way or another they know that they got it from me. Maybe I said what it was once. I have it and they have it, but they don't yet ask how they got it. The youngest is eleven years old. He knows too.

Gerald (14)

I've known that I have HIV since I was ten. I took it calmly when I heard the news. I got it from my mom. I had heard about it a few times at school. About viruses, that they attack your white blood cells.

Martin (17)

My dad thought it was too awful to tell me. He thought I was too young and that I would panic. He didn't want me to be angry with him. It wasn't his fault. He can't do anything about it anymore. I just have it now. Am I angry with him? No. It's more that I'm angry at my mom who is no longer here. She had it already, but maybe she didn't yet know in Indonesia.