Do you wish now that actually you’d been able to find this out before getting married?

Father’Yeah, in a way we wish, but in a way we can’t really, because [wife]’s come from Vietnam. So, you know, she wouldn’t have this, in Vietnam they wouldn’t have this kind of facility to pick up, pick up the blood test, really. And yeah, in a way it’s better to know it so that, you know, in 10 weeks or as quick, soon as possible we can sort of find out, you know. It’s just the bit that the time span is while shes carrying the baby, really. If wed known a bit earlier we could do things a lot earlier. But I think that’s the only thing we wish, that it was a bit earlier, you know, it was known earlier, rather than 20 weeks in the process.

I wonder why it was that late? At what stage was the first blood test?

Father’It, I think it was just a routine blood test really, do you know? Routine. And I just had a letter come through. It was, ‘Could you come and make an appointment?’ sort of thing. And, and that was done and then we came in and then it was another two weeks until we got the results, yeah. And I’ll tell you what the worst thing about that was, that you know, the first test, the first test when I got result and that, they said that if we got a positive result then if it’s – how shall I put this? ‘If it’s bad results then you wouldn’t hear us in-‘ Let me get this right.

[discussion in Vietnamese]

Father’Ah. Shes saying that if she – basically, the doctor who did my test saying, ‘In the first week, if we don’t call you, then the result is good. Yeah? So every day that passed by, you know, we were just getting happier and happier, yeah? So we just thought, you know, after one week, you know, ‘It must be a good result. That’s why they haven’t called us, because, you know… And then after that, you know, then two weeks time, she called us to say, you know, ‘Sorry about the delay’ or something like that, you know. So it was that really, you know. It was, I think the thing is that you have to do it one week, week – I know it’s time pressure – but the thing is you need to know as soon as possible, because every day that sort of delay it just, it kills you, you know? You just, you know, you just think of the implication all the time. You just can’t stop thinking. Yeah, so – so things like that, you know, I think in future for any couple you want it, ‘This week you’re going to get this result this day; this day; this day’ rather than sort of – because by that time every day I was looking at my mobile and every time it rings it could be the result, do you know? So it was like nervous the whole month basically. And it was that really. That’s the heavy part, really, because you–

Was that delay in the results anything to do with it being the E variant rather than the beta, or they just didn’t explain why it was’?

Father’No, they said something about, ‘Theres a lot of work on’ or something like that. And I think they said it – I think the worst part was that they said it was going to be two weeks, but they said if there might be, if it’s a good result then they wouldn’t call us – no, if it’s a bad result they would call us in the first week. And therefore the longer that it goes on you think, ‘Oh, it must be a good result because they haven’t called us. But even two weeks seemed to be a long time, you know. I think, you know, we need to know more quicker really for something like that, because things go through your head all the time, and you need to know and act on it, rather tha

Was the language that the information was presented in an issue at all? Or was it okay because your English is good enough?

Father’Well, for my part I think – I mean, yeah, I mean my sort of level of education I can sort of cope with that – the APoGI thing. But maybe for, you know, maybe for somebody who’s a bit less educated I think it might be – I mean it’s clear but maybe something a bit more, maybe a simpler version down. But for me I don’t how they can simplify something like that down, but it was quite, quite a heavy booklet really. But for me it was perfect because it was very detailed. But I don’t know. The language was fine by me, but I don’t know how other people would cope, would read it, yeah.

And in terms of Vietnamese were, did anybody ever offer you at any stage leaflets in Vietnamese?

Father’That’s interesting. From my, from our perspective – because I’m quite fluent, – but for maybe other couples it might be useful. Because, you know, from what we understand it’s quite specific to south-east Asia, a certain type of, of, you know, people, isn’t it? So maybe that APoGI website translated to those relevant groups, that’s probably more useful. Because I mean, it’s very detailed English, but I don’t think English people get this, go through this problem. So in a way it’s like, you know, who’s it serving, you know? It’s not serving the customer, really. So, yeah, I think that’s a good idea, if they need to be – I mean this blood types very specific to Indians, isn’t it? Indian and then the Greeks?

Footnote APoGI (Accessible Publishing of Genetic Information) website is atwww.chime.ucl.ac.uk/APoGI/and has leaflets explaining different gene variants and their implications for coupleswww.chime.ucl.ac.uk/APoGI/data/html/hb/couples/menu.htm

Father’Well, I think, I thought the nurses at the beta sickle centre were fine. But I felt maybe, I don’t what to do, but I think the two, the two weeks that I was waiting for my results, I felt if somebody could give us more support, I think – give us a call or, you know, saying, ‘Are you okay?’ and, do you know, talk, talk to us, yeah?

There seemed to be a lot of service for, you know, normal midwife and, you know, that sort of thing. But for, for people like me and [wife], with this particular condition, in that two weeks of waiting there was no – we felt there was no particular counselling, I think. I mean that was that aspect of it. And I mean, after I found out my result, I mean, it was very quickly after that we just – I found out the result on Monday, then we had the sort of taking the blood from the baby on Tuesday? Yeah? Tuesday. So it was kind of immediate sort of thing. So, you know, so we didn’t need that much counselling because it just, it’s quicker then. But even then I think, you know, if I was waiting for my result it would be better if somebody was saying, ‘Look, don’t worry about it. It was a very low chance and things like that. And yeah, so maybe just a call, maybe from a professional, because, you know, because these are quite important matters, really and there wasn’t much support in that sense.

And did you feel any kind of direction from the professionals about whether to terminate or not? Or did they leave it very neutral? And, and how was that, if it was very neutral?

Father’Yeah, they left it very – I think I tried to prod them in a way, and say, you know, ‘If I have to go to termination, what, you know, what is the steps?’ And I think they were talking about it. Yeah, they tried to be nice in a way, they tried not to go down that route obviously, and I can understand why. But in a way I want them to say, you know, if termination happens and this, you know, we need to give, we need to go to hospital and this happens, happens. The termination bit, I had to do all the research myself, really, and saying, you know, ‘This, you know, what–?’ In a way I had to force them to explain to me if I want a termination what would happen. So I think they were trying to be neutral, but in a way if the patients want to know, then they should give us the whole works rather than sort of shield away, you know, shield us away from the responsibility.

Where did you find information about termination?

Father’The NHS Direct. I just went to an abortion website and things like that, and…

Did you find Antenatal Results and Choices?

Father’Yeah, I think I did, yeah. I think I did, yeah, just reading round the subject. But again things like that are, you know, it’s impersonal. I prefer somebody to phone and, and talk through with us, you know, what would happen and, you know, what the emotional impact on the woman would be and things like that. So I had, I mean, I went on like very sort of – do you know – the normal pregnancy website to understand it, but that’s just very cosmetic information, rather than the sort of information that I want.

Unvarnished?

Father’Yeah, yeah.

Were there any ever points where you, you found that you were parting from each other in your thinking? Or did you kind of keep pace with each other in terms of your attitudes to termination?

Father’Well, [wife] is a devout Buddhist. So she was meditating, she was believing in, you know, she was praying to Buddha every day and things like that. Whereas I was more, I was more – but it’s different, you see, because I’m not as attached to the baby as her. Because, you know, she wanted to keep the baby. Whereas me as a father I don’t have that sort of emotional bond to the baby yet. So, yeah, I think, I tell her to be – for my part I just thought, you know, if it needs to be, it’s termination. But on her part she was, you know, hoping all the time to keep the baby. Whereas I was, whereas I prepared, I was prepared to, to let go, sort of thing. But I think shes, emotionally she didn’t want to do that, so.

Do you think you, [addressed to female partner] would have done if it had come to it?

[discussion in Vietnamese]

Father’Yes, she said, you know, if need to be, then shed do it. But it would be a big, I think it would be just, you know, emotionally very damaging for her.

Does Buddhism say anything specifically about termination?

[discussion in Vietnamese]

Father’No, not really, no. More, I think it’s more like letting it go, really, and then – theres nothing specific on this issue, no, no. But it’s just more, I think it’s just praying to something, I think, that – just a belief that, you know, you’ve been a good person and, you know, good things happen sort of thing. But that’s more for [wife] than me, you know. I’m not, not so belief in that.

Father’For our purpose, it’s just the baby and, you know, I mean you just sort of don’t want the baby to live a life sort of like that. Because it’s, you know, our perspective life is about fun and, you know, and doing things really. We just don’t want it to, to live like that. Because in that situation I think – another experience we have is that because we, the family’s very small. It’s just me and my wife and my mother, so we don’t have that extended family network to support the baby. Can you imagine when we died, you know, who’s going to, wheres his or her networks going to be? And if you’re carrying a sickness, you know, who’s there for them? So it’s that sort of thing that we can’t, we can’t sort of take the chance with.

Did either of you talk to family members while you were waiting for the results to…?

Father’All the time, yeah, shed be phoning Vietnam all the time, to her sisters and her mother. And I’d be talking to my friends basically. Again talking to people in Vietnam they just think, they just never, they can’t visualise it, you know? It’s just totally unknown to them. So I think in South-East Asia this sort of condition is, it’s not widely known, do you know what I mean? And so over there it’s just, it’s a bit strange to have this sort of problem. But I think the problem we had talking to people as well is that too much knowledge is quite – you know what I mean? And I think theres probably a couple like us in Vietnam somewhere, who probably have the condition but have just gone ahead with it and had a healthy baby and just never realised there was a potential risk, I think. So all these tests bring out all these new scenarios, you know, and it put pressure on. Whereas sometimes not knowing it, just going ahead with it is, might be good, you know what I mean?

Yeah. So as soon as you found out you were both carriers, did, was it a fairly quick decision to decide to have the amniocentesis?

Father’Oh, it was immediate, you know, it was immediate. I think the day after we arranged an appointment to have the test. Because we need to know as soon as possible really, to – if it needs to be terminated then we have to do it very quickly, because every single week that passed by it would be, you know, she would be getting bigger and more attached to the baby basically. So that’s it, yeah.

Father’The problem is that shes, I think the biggest problem we had in this particular, in our situation, it was very late in our perspective. Because it was like, it was 20 weeks when we found out, because things took time basically. But every week that, you know, it was delayed she was getting bigger and she was getting more attached to the baby. And I think that was our biggest problem really. It wasn’t the fact that we have to terminate the baby. If it was like 12 weeks or 10 weeks maybe the emotional impact is not so great. But when it was 20 weeks, do you know, then I think that’s the biggest problem we had really, I think – you know, going ahead with, you know, taking the consequences of our sort of blood type.

Had you got as far as agreeing what you would do? Or were you unable to kind of…

Father’No, we, we agreed that if it – I mean the point is, well, [wife] wanted to keep the baby because that’s – name again – it’s like a maternal instinct. But from our perspective, you know, you’ve got to think of the children’s perspective. We don’t want to have a child who’s, who needs that sort of care and attention for the rest of his or her life, really. So, you know, we were trying to sort of prepare ourself for the worst, really. And it was termination, if it has to be.

Was that a difficult discussion for you both?

Father’Oh, it was very, really. Yeah, we were – I mean it’s my worst sort of, I’ve never been such a – emotionally, it was the worst period I ever had in my life actually. Because it was just – the worst part is just waiting for results, and you’re just, you know, you’re just waiting for something so important. And because, you know, we both sort of come from immigrant background and we don’t have much family, so our first child is very important basically. So, yeah, it was a very, very big decision to make. But, you know, but the bottom – I mean the way we think is bottom line. If the baby has, the baby – then weve just got to take that step basically. Because we don’t want to sort of have a baby who will be sick for the rest of their life sort of thing.

Father’No, I was looking – no, we were preparing for the worst. So I was hoping to speak to somebody who’d actually gone through a termination and just say, you know, ‘How bad was it, you know? And how, you know’?’ We just needed to know. Basically at that time we just needed to know how other people feel, really. And luckily weve got some friends who said, you know, ‘It wouldn’t be that bad, you know. And – but, you know, if wed had other people who’d gone through the same situation it would be better. But again theres very few people have this symptom, do you know what I mean? So it was very hard to find other couples who, who had gone through it.

Would you have liked to meet a family where they’d gone ahead with a pregnancy where the baby had thalassaemia?

Father’Yeah, that sort of thing. I mean that, I think, I think the week before, you know, when we had the results coming out, we needed to know all the scenarios, people who’d had a termination, people who’d been successful, so we have some hope. And then some people – you know, just like – I don’t know. Meeting people is a bit awkward, you know, geography-wise, but like just a phone call or a number that they can give us to call, or a leaflet or – or things like this, exactly, things like this that we can come to where, you know, all the information is just all in one place. So, yeah, I’m hoping for things like this to develop, and then all the, all the health professionals can sort of give this website and say, ‘Go on this website and see all the experience that people have. Yeah.

What sort of factors were taking part in your decision? I mean, you talked about not wanting to bring a baby in the world, into the world who was going to suffer. Were there other things you were thinking about? I mean, I don’t know – religion, or family pressures, or anything like that?

Father’For our purpose, it’s just the baby and, you know, I mean you just sort of don’t want the baby to live a life sort of like that. Because it’s, you know, our perspective life is about fun and, you know, and doing things really. We just don’t want it to, to live like that. Because in that situation I think – another experience we have is that because we, the family’s very small. It’s just me and my wife and my mother, so we don’t have that extended family network to support the baby. Can you imagine when we died, you know, who’s going to, wheres his or her networks going to be? And if you’re carrying a sickness, you know, who’s there for them? So it’s that sort of thing that we can’t, we can’t sort of take the chance with.

Were you aware when, when you had all the routine blood tests that this was one of the things being tested for?

Father’No. Well, there was a leaflet, but it just never – no one, I don’t know anybody who’s gone through it, do you know what I mean? And theres nobody I know who had this sort of problem. So I just, I mean in the pack theres so many – there was a leaflet but I just didn’t take it seriously. I didn’t understand. ‘It couldn’t happen to us’ you know what I mean? Because we don’t smoke, we don’t drink, so, you know, we live a very healthy lifestyle. So you just can’t think, ‘It couldn’t really happen. So yeah, the implication of it all didn’t really, didn’t really hit us at all.

Was that true of screening for other things as well, I mean, like Down’s syndrome?

Father’Down’s we understand, because Down’s we can see and weve seen it in other people, so we understand that. But this thing is just completely – and the thing is I think the most traumatic aspect is that were born with it. It’s not something that we, not because of our lifestyle, but it’s because were born with it. And we thought, you know, we might be a bit unlucky really to, for both of us to have it, really. And it’s strange really, because within the Vietnamese community in [city] people were having children without a problem at all. And we felt a bit weird really that we had this problem.

Footnote often people do not realise that being a carrier does not affect your general health and you may have no idea you are a carrier unless you are tested.

In terms of the information, you obviously found the APoGI site really helpful. What about other sources of information like the, what the counsellors gave you and staff at the hospital?

Father’I mean, I tried the beta – theres a beta sickle cell organisation.

The UK Thalassaemia Society?

Father’Yeah. And they, theres a guy from [city] who, who got the disease and hes trying to phone me up. But I was asking – exactly what this project is for – I was asking, ‘Do you know anybody who is in a similar situation who’d been through it, who can talk us through it?’ And basically he didn’t have a clue. He didn’t have, he didn’t know any couples either. So, you know, things like this will be exactly what we need, to talk through and to understand and things like that. Because the scientific information is quite, is quite good, but there was no personal experience, or some people that, you know – or something, someone more personal who can talk through, who can explain us the whole process, really. Because at that point I didn’t know – you phone an organisation and theres someone picks up and says, ‘Yes, yes. Can you phone this person in [city]?’ And this guy phoned up and said, ‘Yes, yes, but I don’t have any sort of couple experience or things like that. So in the end we just had this scientific information. But if I knew this website [DIPEx] a bit earlier that would, you know, that’d be useful. But I did a search and there was nothing like that comes up at all.

Were you aware when you had all the routine blood tests that this was one of the things being tested for?

Father’No. Well, there was a leaflet, but it just never – no one, I don’t know anybody who’s gone through it, do you know what I mean? And theres nobody I know who had this sort of problem. So I just, I mean in the pack theres so many – there was a leaflet but I just didn’t take it seriously. I didn’t understand. ‘It couldn’t happen to us’ you know what I mean? Because we don’t smoke, we don’t drink, so, you know, we live a very healthy lifestyle. So you just can’t think, ‘It couldn’t really happen. So yeah, the implication of it all didn’t really, didn’t really hit us at all.

Was that true of screening for other things as well, I mean, like Down’s syndrome?

Father’Down’s we understand, because Down’s we can see and weve seen it in other people, so we understand that. But this thing is just completely – and the thing is I think the most traumatic aspect is that were born with it. It’s not something that we, not because of our lifestyle, but it’s because were born with it. And we thought, you know, we might be a bit unlucky really to, for both of us to have it, really. And it’s strange really, because within the Vietnamese community in [city] people were having children without a problem at all. And we felt a bit weird really that we had this problem.

Footnote often people do not realise that being a carrier does not affect your general health and you may have no idea you are a carrier unless you are tested.

Father’Well, yeah, it was the second test basically. And well, we were hoping that I wouldn’t get it, but it turns out that, well, the result came and basically I’m carrying the haemoglobin I think E variant, which is not quite the same as beta that [wife] has, but is just as bad I think. So, yeah, I mean we were just hoping that I didn’t have it but then, you know, we found out that weve both got it. And it was, just, you know – they called us basically and said, you know, ‘You’ve got the results and well see you the day after’ and, yeah.

So how did [wife] find out, how did you find out that you were a carrier?

[brief discussion in Vietnamese about who will answer]

Father’I can speak for her. Well, she basically, we just had a routine blood test and then she just had a letter saying that, you know, ‘Yes, you’ve got, you’re carrying a beta sickle cell or something like that, and please come to like a specialist centre in [city]. And at that point we didn’t take it seriously because it was like, because you never, we just didn’t expect it, you know. There are certain things you read about it but you don’t think that it will happen to you. So we just went along and, you know, they told us about the implication of the whole thing. And it was like very serious really. And we didn’t expect that. We just thought it was another blood test, you know, and just maybe a bit more iron or a bit more or less. But we didn’t expect it to be that serious.

Footnote this man is a carrier of haemoglobin E and his wife carries beta thalassaemia. In each pregnancy, their baby will have a 1 in 4 risk of having haemoglobin E/beta thalassaemia, which may result in mild, moderate or severe anaemia.

So you went along for a blood test yourself?

Father ‘Yeah, after. After she got the test, then I had the test to see whether wed both got the blood type basically.

And then you got a letter telling you the results, or a phone call?

Father ‘Yeah, we – no. It was like, let me think now. The first like duration, we found, we came in on Tuesday and then they said that, you know, they’d do – what was it? My blood test would, would be in two weeks time. So, so two weeks time I phoned up and they said that I’d got the wrong blood type. And then after that we had the, taking the blood from the baby. So that’s another week, you know. So that sort of duration. So it was obviously like over a three week period.

So when you went for the counselling and, knowing that you were a carrier, what did they tell you about the condition?

Father ‘They gave us a leaflet and I think it was quite informative really, do you know? And the leaflet was sufficient, basically, saying that, you know, basically if weve both got the – just this 1 in 4 chance that we, the baby got both our genes then it will be bad. And, you know, I did some Internet research and things like that. I think we did understand more once I got the test as well. Theres a particular website on the UCL university, and that’s very very informative, because that’s, I think that’s the most informative bits really, do you know? It’s sort of really, you know, saying, ‘If you’ve got this type, this type, this type, this type. I think that’s the best website that I found, you know, if you’ve got a certain condition between two people.

That’s the APoGI website?

Father ‘Yeah, the APoGI one, yeah’.

Yes, because presumably it must have been an issue for you that you had a beta and an E variant…

Father’Yeah.

…and trying to work out what that means?

Father’Yeah, because I mean we thought, ‘Well, one a beta, then I’ve got a haemoglobin E,’ then thought, ‘God, you know, how unlucky is that?’ you know. I thought, you know, because I haven’t got beta, I thought I’d got away with it. But then it turns out that I’ve got this haemoglobin E malarkey. But that website is very good, really. But I mean all the results – and you can read as much as you want – but I think our philosophy is, ‘The bottom line – what is the bottom line, really?’ And the bottom line is, you know, weve just got to hope the baby don’t have our, both our blood type really. And I think that, you know, we can read as much as we want – I mean we’ve done some reading, but theres no point in reading any more, do you know what I mean? Because you’ve just got to wait for the results and just, you know, if it happens, it happens.

Footnote APoGI (Accessible Publishing of Genetic Information) website is at www.chime.ucl.ac.uk/APoGI/ and has leaflets explaining different gene variants and their implications for couples www.chime.ucl.ac.uk/APoGI/data/html/hb/couples/menu.htm

Did either of you talk to family members while you were waiting for the results to —

Father’All the time, yeah, shed be phoning Vietnam all the time, to her sisters and her mother. And I’d be talking to my friends basically. Again talking to people in Vietnam they just think, they just never, they can’t visualise it, you know? It’s just totally unknown to them. So I think in south-east Asia this sort of condition is, it’s not widely known, do you know what I mean? And so over there it’s just, it’s a bit strange to have this sort of problem. But I think the problem we had talking to people as well is that too much knowledge is quite – you know what I mean? And I think theres probably a couple like us in Vietnam somewhere, who probably have the condition but have just gone ahead with it and had a healthy baby and just never realised there was a potential risk, I think. So all these tests bring out all these new scenarios, you know, and it put pressure on. Whereas sometimes not knowing it, just going ahead with it is , might be good, you know what I mean?

Yes, I mean I suppose that’s the other point of view, isn’t it? That actually it might be better never to know?

Father’Yeah, and just, just —

Do you, do you ever think —

Father’Well, for my part I don’t think so, because at the end of the day, you know, if the baby come out not well then, you know, then theres not – what’s the point? But sometimes, you know, it may be easier. No, not from our perspective. From our perspective maybe it’s better to know, but in a way you wish, you know, you never knew and, you know, you’d just gone ahead with it, and you just take the chance basically. But I think I prefer to know. But now you know it, you can’t go backwards sort of thing.

So neither of you had any knowledge of family members who are carriers or have the condition?

Father’No. I mean we asked our mother, and she asked on her side, and just no knowledge whatsoever. I think what we, having talked to our parents and things like that, I think in Vietnam, you know, some people have it and they obviously – because they don’t have the facility to do things like that – so I think people have it but, you know, they just, if the baby’s sick then they just say, ‘Were just unlucky, you know. Theres something wrong with the baby’, really. So I think obviously somebody in our family got the, is carrying the same blood type, but they just don’t know that such a condition exists, do you know what I mean? And they just say, ‘It’s a bit unlucky’, really. But they don’t understand the concept of the whole thing. It’s just a bit unknown.

So had you heard of thalassaemia before or was it completely new to you?

[checks with wife in Vietnamese]

Father’No. I mean I thought I was, knew a lot, but this is completely – no, you know, not at all.