Screening for sickle cell and beta thalassaemia
Telling people you are a carrier: Implications for relationships & marriage
When people find out that they are carriers, and intend to have children, it has implications for current or future relationships. For people who discover they are a carrier during pregnancy and are already in a relationship, the first priority is usually to get their spouse or partner screened too (see 'Partner carrier screening').
However, many people we talked to would rather have known before choosing a partner and said they might not have got together if they had known they were both carriers. This was true for people from a range of different faith groups and cultural backgrounds.
In communities where arranged marriage is customary, telling people your son or daughter is a carrier may be a difficult thing to do. However, several people thought it was better to be open about being a carrier, and said they thought it was important that both potential partners in an arranged marriage should be screened. They wanted their children to know about their carrier status so they could make informed choices.
When her daughter grows up, the family will ask for her future marriage partner to be screened to check if he too is a carrier before agreeing to the match. (Read by an actor in Urdu.)
When her daughter grows up, the family will ask for her future marriage partner to be screened to check if he too is a carrier before agreeing to the match. (Read by an actor in Urdu.)
English transcription, video and audio clips in Urdu, read by an actor.
You mentioned marriage again, that both people should be tested before marriage…?
Yes. My mother-in-law said so. She [mother-in-law] said that she [daughter] has thalassaemia [carrier], and she says to me that whenever you arrange her marriage, it will be important to get the boy tested as well. Otherwise there will be problems for the girl. Children are born following such difficulties, and such pain, and if the child dies after birth, then the mother will suffer more than the child. The mother will suffer.
So she is concerned about her granddaughter?
Yes.
But how would this happen? Say for example, if your daughter was an adult now, right, and if, you are arranging her marriage with your brother's son, for example - sorry, I don't know if your brother has a son…?
…yes, he has a son too.
For example, if your brother ask for your daughter, for his son, then will you be able to say that 'I want to have your son tested', and why? How would you do this?
I will say to him that I want to have both of them tested, 'My daughter has thalassaemia [carrier]. It's a condition, not a dangerous one where an individual would die or something, nothing like that, just a minor condition, and we want to have the boy tested to see if he has it or not.' If my brother says, 'Yes, I'll have him tested', then that's okay. If he has thalassaemia, then I would say, 'No', I would not be able to arrange my daughter's marriage.
Don't you think that they will think that your daughter has some disease?
Yes, he will think, will say, 'I hope my son does not have this condition. It's an arranged marriage from my sister, she wants to give her daughter to him, my son. God forbid, I hope he doesn't have this condition.' Then the both of us, brother and sister, could arrange the marriage. Yes.
But is there any fear in your mind, that you don't want them to think about what condition it is that your daughter has?
I will explain to them, so there is nothing to worry about. I will say that I am alive too.
Yes, of course.
My daughter will live too. We both have thalassaemia. I am fine, wandering around, and now my husband doesn't have it and my children will be safe. If I had it and my husband had it, then my children would not have survived.
Footnote - This woman and her daughter are carriers of beta thalassaemia. It is important to distinguish between being a carrier, and having the condition beta thalassaemia major. People can only inherit the condition if both their parents are carriers.
Once the marriage has taken place, it would not be acceptable for the husband and wife to separate if they discovered at that stage they were both carriers. As one mother pointed out, it can also be difficult if a marriage has been formally agreed when the couple are still very young.
Parents should not arrange marriages when the couple are still children, because it makes it harder to cancel the arrangement later on if they are both carriers. (Read by an actor in Mirpuri.)
Parents should not arrange marriages when the couple are still children, because it makes it harder to cancel the arrangement later on if they are both carriers. (Read by an actor in Mirpuri.)
English translation, video and audio clips in Mirpuri, read by an actor.
And your husband knew before marriage that he is a carrier?
He is a carrier.
Everything was explained to him in childhood that 'If you marry, then make sure that the girl is not'…
… that she is normal.
Did you ask him later why he did not check?
No, no. The thing with him was that he was young. He was seventeen when we married. His mother took him to Pakistan and our marriage was arranged long before that. But this should not happen, because you don't know. I was young and my uncle [father-in-law] said that we want this girl [for our daughter-in-law], that's what happens in Pakistan. And then when they went for the wedding, then who would have let them check blood? They would have said, 'You have her hand in marriage and you want to pull out.' Some people say that 'Your son won't agree, that's why you're doing this. That's why they kept quiet.' They learned about my blood when I came here. And no-one in Pakistan would believe you either.
About what?
About carriers. They do now, but they didn't then. It's been eleven years since my wedding.
Why do you think they don't believe this?
I say that they should. You shouldn't take on this headache. It is the mother and father's responsibility to take care of their children, raise them. After that, it is up to the children for their own life. If the children themselves say, if my carrier son says, 'I don't want to marry a carrier girl', don't do it, because then it is their life. They have to look after their own life.
You said something very good, that if they said that the girl should be tested when they went to Pakistan, and you would have said, maybe your family would have said that the boy is pulling out, or they don't want to marry…
…yes, that's what happens in families.
Yes, I completely understand this. But then…?
The best thing is that marriage should not be arranged at a young age [in childhood]. No one should know whether anyone has asked for this girl, or who will marry her. Yes, when she is older, take your son, and even then the girl's blood should have been tested, if you know that the boy is a carrier then tell him which girls are normal and 'Marry which ever of these that you want to', that's better.
But you said, like I was saying about your husband, that his asking would be like…?
…But our marriage was already agreed. I'm saying that it should not be agreed. It should not be agreed at a young age. Nobody should know. People can go to visit Pakistan for no reason. Now just about all our village knew that my marriage had been arranged from a young age, that this girl's [hand in marriage has] been given there. To tell you the truth, my mother used to tell people too, that we've given her to that boy. When I grew up, and people asked [for my hand in marriage], she'd say I've given her to such and such. You shouldn't do that. There are girls inside the family and outside, and no-one should know that this girl has been given to that boy, or this boy will marry from there.
Some couples who discover after marriage they are both carriers might choose to have children anyway, and accept them as they are. Some might choose prenatal diagnosis and be willing to consider ending the pregnancy. Others might decide that it was best for them not to have any more children.
She will advise her daughter not to marry another carrier. Parents have a duty to protect their children. If she and her husband had both been carriers they would have had no more babies. (Video in Urdu.)
She will advise her daughter not to marry another carrier. Parents have a duty to protect their children. If she and her husband had both been carriers they would have had no more babies. (Video in Urdu.)
English translation, video and audio clips in Urdu.
Okay. Are you happy that you have been tested and told about this D Punjab?
Yes, absolutely. I am most happy that at least my daughter will know when she chooses her partner and she will know that she would not marry such a person.
Some people are such that they would say, 'No, no, if D Punjab doesn't make a difference to the individual then they shouldn't be given much information, you shouldn't worry them because their children are still young', etc. What do you think?
No. At least parents should know. Children are young, but will grow up tomorrow, and obviously they have to face their future themselves, so you should tell them first (parents should tell the children). At least the parenting is in the hands of the mother, hands of the father. We teach them. When they grow up' in childhood you say, 'Don't go there, dear' - then doesn't the child go there when he grows up? But at least you have told them not to. You have done your duty. We think parents should be given as much information as possible about their children. This is our duty.
I was just asking because some people say that if 'No, if we give this information, then parents will become upset''
No, no, no. What is there to be upset about? No, no, there is nothing like that, and individuals should know. Look, knowledge is never disadvantageous in any way. Thank God that my husband does not have it. If he had it, then we could not have done anything, but we did not know at the time. If we knew, then we would have taken steps after consideration.
Interestingly, you said that you would not have done anything. What do you mean by this?
It means that if we were married and there was no haemoglobin problem in the first baby, but we would have stopped the next time. If my husband had the S trait and I have D trait, and luckily the first baby did not have it, then we would not have had a second child.
Okay, so you wouldn't have done it'
'because we would have taken precautions. If we know that the child will be disabled, then why should we have such a baby, for whom his own life will become a problem? This is how we are thinking.
Some people say that if there is a chance of this happening, then they can test you in pregnancy. For example, thank God that your husband is normal and he did not have S trait, but if he did have S trait, then you would have told that you could have the baby tested'
'I would have definitely had it if it was curable. Because, look, I would have done whatever was in my hands, the rest is up to Allah, what an individual do in front of him.
These tests are usually done because it is not curable, so you could have a termination?
But, I would not have done that.
Right.
Yes. It is not wrong to take precautions before pregnancy, but even if the baby is disabled, in pregnancy, and I knowingly became pregnant, then I would never terminate my baby. How could I kill something to which God has given life? Yes, I would take precautions the next time, that I would not have a second child.
Although many people we spoke to were in favour of telling people before arranging a marriage, not everybody will choose to do so. One woman from an Indian Sikh background explained why she and her family did not tell her future husband's family she was a carrier. She feels it will be up to her children to make their own decisions when the time comes.
She felt the risk that her partner would also be a carrier was very small, so she did not ask him to get screened before marriage. (Read by an actor.)
She felt the risk that her partner would also be a carrier was very small, so she did not ask him to get screened before marriage. (Read by an actor.)
Video and audio clips read by an actor.
So what did you think about when you chose your partner then? How did thalassaemia fit into all of that?
It didn't actually. I didn't… I had an arranged marriage. You know, you don't say you've got a disease and “We want to check you, you know, your son, if he's got it as well.” You just went and got married. And when it came to kids - and you automatically being Asian now you get tested for it. And I already knew I was a beta thalassaemia carrier. And I had told my husband about it, so he got himself tested when we had our first son. And because he didn't have it, it wasn't really an issue. But I wasn't, you know, when I was looking for a partner, it wasn't a major topic at that time to think, “Oh, I've got to screen him before I actually get married to him.” I didn't go that far because it was based on, “Well, there's a probability.”
Her parents' generation would not want to tell other families because they feel there is a stigma associated with being a beta thalassaemia carrier. (Read by an actor.)
Her parents' generation would not want to tell other families because they feel there is a stigma associated with being a beta thalassaemia carrier. (Read by an actor.)
Video and audio clips read by an actor.
And when you did tell your husband's family, was there any kind of comeback from that, or the feeling that, “We would have liked to know before”? Or was it not a problem?
I don't know. I think they were quite surprised when they realised that I was a beta thalassaemia carrier. And I think my parents were just always, my mum was very much like, “Oh, well, don't say anything.” And they feel that it's like a stigma that there's something bad. You've got something. You know, there's something wrong with you. And I was like, “Mother!” you know. But yeah, I think our parents do, and I think my in-laws possibly did. But then my sister-in-law's got it. You know, my husband's brother's wife, she's got it. So she had to get tested as well, which my mother-in-law didn't know. So when the counsellor came to see me and she had this talk and my mother-in-law and father-in-law were there, and then afterwards I says, “Oh yeah, well, so-and-so's got it.” And she said, “No she hasn't.” I said, “Yes she has.” Because his brother told me that she had got tested. And so she was quite, “Oh. Right.” [laugh].
So I don't know, I suppose, yeah, they do think, you know, they're coming into their family and they've given them something [laugh]. And they probably think like that. And like our parents are like, “Oh, we don't say anything.” Whereas we think, “Well, it's no big deal.” You know, that's part of you and it's not as if it's going to - it would only be a problem if he had it. So he hasn't got it. It's not a problem. And when our children get old and decide to have kids, that's up to them what decisions they make and how they go about it. You know, you can't tell them what to do, just like if our parents told us what to do regarding this, we would just think, “Well, no. It's our choice.”
The question of finding out about carrier status before entering a relationship was equally important for many people in communities where it is customary to choose your own partner.
She would have liked to know if she or her partner were carriers before they got together. Choosing your partner carefully is important for the baby. (Read by an actor.)
She would have liked to know if she or her partner were carriers before they got together. Choosing your partner carefully is important for the baby. (Read by an actor.)
Video and audio clips read by an actor.
Abortion for me is just like a big sin. So I couldn't do it. But I think if I knew, if there's a way I could do a blood test before even getting pregnant that would be a different thing to me, you see? Because I would know myself that I can't have a child with someone who's got sickle cell. It's true you can't choose partners but the child's innocent. It's me and the person that's bringing up that child, giving the child that disease. It's not the child himself. So it's two people.
Would you say to people, then, based on your experience, that it would be better to be tested before pregnancy?
Yeah, before. Yeah, I would just reckon to all the - I don't know, if you're from an African background, or Caribbean, I would personally say to, if you want to marry someone or get involved, for my point I think you have to choose who. Well, you might be in love with the person, but at the end of the day it's the child that will be suffering, not you two. So you have to choose who - be careful really to know.
Footnote - although sickle cell is more common among people of African origin, it can also be found in people from other ethnic backgrounds, including white people.
One woman, who is a sickle cell carrier, was glad she did not find out her husband carried haemoglobin C until after they were married, even though she had tried to avoid marrying a carrier.
Of course, it may be difficult to ask someone if they are a carrier at the start of a relationship, and people often become involved with each other before discovering that they are both carriers.
Asking a partner if they are a carrier is difficult, but having a baby with sickle cell anaemia or terminating a pregnancy is also very upsetting.
Asking a partner if they are a carrier is difficult, but having a baby with sickle cell anaemia or terminating a pregnancy is also very upsetting.
Looking back to when you first had the, the blood test, when you came to the UK, do you now feel you should have been told more at that point?
Yeah.
What would you have liked then?
Just maybe, maybe to know like, or if they can tell, or saying to people that, 'Because you've got sickle cell trait you can't go out with somebody - you have to try to find somebody that is not.' But it's a bit difficult for you to start going out with somebody and telling the person to go and get a blood test. That is so difficult. It would be so difficult. So you wouldn't even know anything. And if you find out, it's like after the, for example when I found out, because they found out I had sickle cell trait, like three months you can do the screening and thing, and then you find out that your child might have sickle cell.
It's like having abortion, that's very very painful. It is very painful. Up till now when I had the abortion, the last one I had when she was one, lately I was thinking, 'Oh, gosh, if I'd had my baby, here she would have been one.' Because, just, just because I was so scared that the child might have sickle cell.
If I'd known, that's it. If I'd known. Sometimes I just say that to myself because I can't even, because if I keep saying that to him I know we're going to be fighting all the time. So I say that to myself most of the time. 'If I'd known.'
But then as you say it's difficult, because you don't, you can't ask someone on a first date. And then if you've started to get to know each other and like each other, then it's hard to separate?
I've actually known him for a very long time. I've been going out with him since I was like 17 in Sierra Leone. And that, at that time we didn't even have - because the medication back in Africa is not that good. We don't have information about that thing. But he didn't know he had sickle cell trait until after the [pause] the baby. But sometimes I just sit down and think, 'If I'd known.' And even when I had the child, he's actually, he's, he asked me to get married. But sometimes I just think like, 'I'm going to be having a child with sickle cell.' Up till now I can't even give him an answer to say I'll do it or whatever.
A few people said they might change partner or would rather not have any more children with their current partner. One couple described re-considering their relationship while they were waiting for the amniocentesis results during their first pregnancy, because they both very much wanted to have children. The husband said, 'If that doesn't work out, then we just have to consider maybe changing partners or doing something else. So it was that serious.'
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.
If they had both been carriers they would have had no more children together.
If they had both been carriers they would have had no more children together.
If you had both been carriers, what do you think you would have done? Would you have tried to have more children, and then have tests during pregnancy to see if the baby was affected, or would you just have not had any more?
Father' What do you think? Have another baby if we had some big problem, or not? Not have one?
Mother' No.
Father' No.
Mother' We'd see what happened, what's going on.
Father' No, if that had been the situation, then we wouldn't have had any more children. Obviously with Down's syndrome and all that, all the things that they test you for while [wife] was carrying, it wouldn't have been a problem. But if you've got the choice, if you really do have a risk of having that at a later date, then no. No, I don't think we would have had any more.
Other people felt they would stay with their partner but would have prenatal diagnosis and then decide whether they wanted to keep the baby. As one mother said, 'I know the different ways of finding out, you have a choice to keep the baby or not to, so it's not the end of the world. So I don't see it as a big deal at all.'
Another mother felt if you were in love with someone you would marry them despite the risks.
She would still have married her husband even if they'd discovered they were both carriers before marriage.
She would still have married her husband even if they'd discovered they were both carriers before marriage.
[Laugh] I would have still married him because everybody has their soul mate, you know? I'd have still married him. Maybe that's why we never checked. When you're, when you're made for somebody, you're perfect together, you forget the rest, the risk involved and all kinds of stuff. So I would have still married him. I married him against all odds, with even our different ethnic background - because in my country I'm Hausa, he's Yoruba. We don't really intermarry. My parents, my father didn't accept it at first, but I still went ahead to marry him. No, I'd have married him. It didn't matter. I don't think we'd have checked, but if we had checked I'd have still married him.
One couple got married knowing they both carried beta thalassaemia. As Catholics they would never consider terminating a pregnancy, but they were hoping that with modern technology, especially pre-implantation genetic diagnosis, they could avoid conceiving a baby with the condition. (See 'Pre-implantation genetic diagnosis')
Other parents also wanted to make sure their children knew how important it was to tell future partners if they were a carrier.
She plans to explain to her children in their early teens what being a carrier means, so they know they have to be careful.
She plans to explain to her children in their early teens what being a carrier means, so they know they have to be careful.
[Sighs] I don't know. I don't what's the right age to tell them, but I think pretty early, because boys and girls will be boys and girls, and they can have children at an early age of 13, 14. So I think, yeah, I will tell my children quite young that, 'Look, OK, you're going to explore girlfriends or boyfriends, but you need to be extra careful, because you have this in your blood and you could pass it to your baby. And if your girlfriend has this in her blood then you've got a potential chance of your baby being a full blown sickle cell carrier. So you've got to be extra careful.'
So I think from about 12 I'll explain. I will always let them know about it, but to sit down and explain to them the chances I think I need to do it between 12 and 16, in that age, so that they know. Because, like I say, some kids go early, and I don't want to take that chance with my grandchildren, you know what I mean? If I could have prevented it with my children I would have done. But at least now I know I can help my boys with my grandchildren to prevent it happening again, and any chance of them having full blown sickle cell babies.
Footnote - if both partners are sickle cell carriers, each baby has a 1 in 2 risk of being a sickle cell carrier and a 1 in 4 risk of having sickle cell anaemia. There is also a 1 in 4 chance that the baby will not inherit the carrier gene from either parent and will therefore not be a carrier or have the condition.
Last reviewed December 2018.
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