Interview 12
Female partner discovered she was HIV positive when she came to the UK. When she changed HIV consultant, a routine blood test showed she was a sickle cell carrier. Male partner has not yet had carrier screening.
Couple with no children, aged 35 (female) and 57 (male). Female partner is not working, male partner is a carer. Ethnic background/nationality' Female- Black African, Male- White British.
More about me...
The female partner in this couple first discovered she was HIV positive when she came to the UK from Nigeria two years earlier. She has been responding well to medication since, and remains well. She met her current partner shortly after learning her diagnosis. For him, the fact that she is HIV positive has never been an obstacle to their relationship. They decided to move in together and at that point she decided to change her HIV consultant to one nearer to her new home. The new consultant ran a series of routine tests and one of these showed that she was a sickle cell carrier.
She already knew something about the condition from Nigeria, where in her view people talk about it more openly than about HIV. She had not previously realised you could be a carrier and remain well. She now knows it is important for her to avoid having a partner who is also a carrier. Her partner has not yet had screening himself, but because he is white they feel it is very unlikely he will be a carrier. They would like to have children together, but he has had a vasectomy, and they have to practise safe sex because of her HIV. Until they have thought through these issues, the question of sickle cell carrier screening is a lower priority.
For her, discovering she was a sickle cell carrier did not seem very significant compared to having HIV.
She discovered by chance she was a sickle cell carrier when she changed HIV consultant and had new tests done.
She discovered by chance she was a sickle cell carrier when she changed HIV consultant and had new tests done.
And tell me about the, the moment when you then found out about being a carrier for sickle cell and how that happened?
That, like I told you, that happened this year. Because I changed my consultant because I was having accommodation problem. He [partner] lives in [town] and I'm in north London.
So he said I should move in with him. So I need to change because of the travelling, and because we are advised that you'll need to have a consultant, a clinic that is close to you in case anything happens. Because it's quite some distance and because I'm so comfortable with the consultant - he's the man that I'm losing - I didn't want to change. But I had this consultant came to the group I use, and I'm not very good with women in the medical - but the way she spoke I said, 'Okay, I might give it a try.' A lot of people use the place. So I went to see her and I decided to change.
So then they started tests all over again to see what and what, and then they need to get my case study from the hospital, they need to do their own set. So after everything, the only thing that came out negative was that I was a carrier. And that was a shock to me. It's not a big issue to me, because I know about it back home. The only thing was that it was a shock to me because they didn't tell me that before. So, and she said, 'You have to be careful with your partner that he's not a carrier.' Then the question I asked her that, 'How can I be a carrier? I've never been sick. I'm not in and out of the hospital. And none of my siblings are, and my mother.' She said it's possible because it's one of my parents that's a carrier, that's why none of the children - that the only problem is if both, both partners are carriers. So now what I have to avoid is getting involved with somebody that is also a carrier. And ever since that has not played any issue. It's no big deal to me because I know about it. I knew a lot about it than the HIV. So I know the only way to prevent it is not to get involved with somebody that is also a carrier as I am.
If she discovered her partner was carrier she might change partner rather than not have a child.
If she discovered her partner was carrier she might change partner rather than not have a child.
What would you do if you found out that your partner was actually a carrier?
I wouldn't think of having a child with him, because I wouldn't want to go through it. Like I keep telling him, the HIV is enough for me. I wouldn't want anything, any stress or - that's when the love is not enough, that 'Oh, because you love somebody then you have to go with it.' No.
So would you, you'd choose the route of not having a child at all rather than getting pregnant and then having the baby tested to see?
I wouldn't say I would like not having a child. Then that means my having a child with him would be over. Then I have to look for somebody else.
She has heard that in Nigeria people celebrate if someone with sickle cell anaemia reaches their thirties.
She has heard that in Nigeria people celebrate if someone with sickle cell anaemia reaches their thirties.
Yeah, because I've seen people with sickle cell. It's not something - even because there is no medical, there is no medicine or any way to eradicate it. People can live, like I think in Nigeria we have a club that if you've passed 30 and you're still alive then they believe you're not going to die of it. But if you're below like 20 they are still - it's like they look up to the children and will say that, 'Oh, when they're in their adult age and if at the point they're 20 and they're having crises and they don't die that means they have outgrown it or something like that.' So it's something they celebrate back home in Nigeria, it's something they celebrate.
But it's not something if you know somebody close to you like you want to go through. It's not something you want to go through. Because if you have a child that has sickle cell, you can't hide it, you can't hide it. It's worse than, - I can hide my HIV. I'll tell who I want to tell. You can't hide it, if I'm sickle cell, I can't hide it from anybody. Because you can't hold a job, you can't be in school, there is a limit to what you can do, because you are all the time sick. And when you have crises it's the worst. You don't have crises with HIV, you don't. With sickle cell the crises, that's why I said I don't know which is worse, people having asthma having crises, than people with it.
Professional learning: She does not believe her white partner needs to be tested because she feels it is so unlikely he will be a carrier.
Professional learning: She does not believe her white partner needs to be tested because she feels it is so unlikely he will be a carrier.
Woman: We've not really -
Man: No.
Woman: -because he hasn't done the sickle cell. But because one, I'm not bothered about him because I know he will not be a carrier, because it's not very common in white people. It's a black people thing. So I'm not bothered. I don't think we'll be of the same blood group or anything. I don't think so. That, I'm very positive, it's not possible. Because he doesn't --
Man: We've only just touched on it, haven't we?
Woman: Yeah.
Man: Very, very recently.
Woman: Yeah. You don't have any black origin in your family? No. Even if you have, it will be distant, distant, distant.
Man: Only, only maybe on my mother's side when my grandfather went away, ran away, a long time ago.
Woman: So.
Footnote: white people can also be carriers of sickle cell or beta thalassaemia. If a woman is a carrier, the baby's father should be offered screening irrespective of family origin.