Interview 29
More about me...
As a child, this mother often felt tired and had a lot of headaches. She had blood tests and was told she was anaemic. When she went away to university, her doctor decided to test for beta thalassaemia, and she was found to be a carrier. At the time she was given very good information and a thorough explanation.
She suggested to her parents that they should be tested and her mother discovered she was a carrier. She herself had an arranged marriage and her parents decided not to tell her husband's family that she was a carrier. It was only during her first pregnancy that she was tested again and her husband was tested. He is not a carrier, and so they did not need to take any further action.
They decided not to have any screening for Down's syndrome and would not have terminated the pregnancy for either Down's sydnrome or beta thalassaemia major. They are Sikhs, and her husband is more religious than she is. They both felt their decision not to test for Down's syndrome was more a personal moral choice than a religious choice, whereas she felt her parents' generation would attach more importance to religious principle in decision-making. However, she believes it is important for parents to have as much information as possible to prepare themselves, and be able to make fully informed decisions.
When her children are grown up, she will leave it to them to decide how they want to approach screening.
Although she already knew she was a beta thalassaemia carrier, she has been tested again in both pregnancies. She does not mind if it helps keep records up-to-date. (Read by an actor.)
Although she already knew she was a beta thalassaemia carrier, she has been tested again in both pregnancies. She does not mind if it helps keep records up-to-date. (Read by an actor.)
Video and audio clips read by an actor.
So when they tested you in pregnancy, did they actually say that they were going to test you for thalassaemia carrier status in pregnancy?
Yes. Even - because on the notes, you know the notebook that you have to complete? It actually says all the listed diseases that you could be a carrier for, whatever, and if you know if you've got it or if anyone in your family have got it. I'd actually already ticked thalassaemia because I knew. So even though they know that I knew, they still, you know, got me tested again, just to confirm it, I suppose, for their own records.
So are you glad you were tested again in pregnancy, then?
Yeah, yeah. They still tested me this time as well. I think so, because even though I had ticked it and they had my notes from before, I think just to keep the records up-to-date, because they don't carry the other records around.
And I have to have a card which I've got in my wallet that I carry around as well, to say I've got beta thalassaemia.
Footnote - there is no need for the carrier screening test to be repeated if there is a valid record of a previous test result.
She often felt unwell as a child, and was diagnosed with anaemia. At university she discovered she was a beta thalassaemia carrier. (Read by an actor.)
She often felt unwell as a child, and was diagnosed with anaemia. At university she discovered she was a beta thalassaemia carrier. (Read by an actor.)
Video and audio clips read by an actor.
Since I was at school, I was always getting headaches, I was always getting checked for why. I kept having blood tests because they wanted to know if I was anaemic, because I always used to have headaches. And they said I was anaemic and that's it, and gave me iron tablets. And it was only when I went to university in 2000 that they actually wanted to know why it was that I was anaemic for so long. Because it was just a regular thing where I felt so tired, I was lethargic, and why I always kept getting headaches. And they realised that I was actually a beta thalassaemia carrier. And so that was back in 2000 when they actually tested me then. And that's when we got to the root of the problem.
The earlier you are screened in pregnancy the better, so you have time to make decisions. (Read by an actor.)
The earlier you are screened in pregnancy the better, so you have time to make decisions. (Read by an actor.)
Video and audio clips read by an actor.
I suppose it's good to have that knowledge and you know what you're getting yourself into. And so if you've got the knowledge, you can make a definite decision for yourself. I think if you don't know, then you sometimes get into that thing where it's too late to make a decision. And so whereas if you know, you know with your eyes open, “This is what it entails, and this is what's going to happen if you do go ahead with it.” And if you know the worst case scenario, then you can judge how you want to go about doing it.
So I think it's very important that this information's there, and it is going out to a lot of people, and they are picking up on it. And I think from when I got tested and from when I had a phone call from local Health Centre, it was quite quick. You know, it was quite early on in pregnancy that they picked it up, maybe before the first twelve week, fifteen week scan. So they are trying, they are trying to get to those people quite quickly and make you aware, to make that right decision. So that's good. And it's helpful.
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.”
In her area there had been an information campaign to raise awareness about beta thalassaemia. This included a talk at the local Sikh temple. (Read by an actor.)
In her area there had been an information campaign to raise awareness about beta thalassaemia. This included a talk at the local Sikh temple. (Read by an actor.)
Video and audio clips read by an actor.
I think in the last, say, five years there's been a major hype about thalassaemia. And there's a lot of presentations been going on in various religious groups, where they're coming to the temples and they're coming to community groups and they're trying to send out that message to everyone' “Be aware of it.” Because my mother-in-law knew about it, because there was someone that came from the local Health Centre to the temple and raised that awareness.
And I've been talking to so many people and I mean, in any Asian community, there's so many people that have got thalassaemia. It's just so common.
A lot of people from India or that part of the world, it's very common to have beta thalassaemia, whether it's Pakistan, India, Bangladesh. And then whereas if you're coming towards Africa it's more sickle cell anaemia. So they kind of like gave you this kind of background as well.
Professional learning: She feels personal choice and attitudes are becoming more important than religion for Sikhs of her age compared to her parents' generation. (Read by an actor.)
Professional learning: She feels personal choice and attitudes are becoming more important than religion for Sikhs of her age compared to her parents' generation. (Read by an actor.)
Video and audio clips read by an actor.
I think all of it's our personal preference on that. I'm not that religious, whereas my husband is. But his way of thinking is - I mean, with this Down's Syndrome, that's the prime example for us at the moment. We've blatantly said, “No we do not want to get tested for it”, solely because we feel that we shouldn't judge it, basically. We should think if that's what's meant to be, we've got to, we will go through it. And it's going to be hard, because I know what the consequences in some of these pregnancies are. It's a major thing. You can't just take it lightly. But it was more, I wouldn't say it was religious. It was more just us, the way we think. And I think the younger generation would think on the personal level rather than a religious level. Whereas our parents would be more religious, thinking, “Well you shouldn't terminate, full stop.”
Because that's what the religion says?
Yeah, yeah. I think our parents' way of thinking and our way, the next generations' way of thinking is, you think for yourselves and you think, “Well, religion, let's put that aside, and see - can we cope with it or would we be able to handle it?” And make a decision based on that. I think our mentalities are quite different from our parents' way of thinking.