Father: I think it’s always better to have, as you say, have a phone call and have someone talk to you, rather than have a letter, an open letter and think, ‘Oof. What’s this all about?’ Which is, you know, the situation that we found ourselves in for the first, for the first 24 hours, and then waiting for the results and whatever. But the most important thing for us was actually speaking with somebody, and having somebody explain everything to us, you know? So. And maybe with it being more of a foreign, a foreign disease and perhaps it’s with foreign people, it might be easier to have translators. Because my wife didn’t really understand to a great degree, and obviously other people find the same situation. That might be a good thing.

Mm. So they haven’t got any information in Thai?

Father: Hmm. The midwife was very, very good. She went onto a website. I mean, we haven’t [er], were not e-mail or website friendly, but the midwife got us some information off the Internet in Thai, which has helped my wife.

Mother: Mmm.

Father: But weve asked all the way through the pregnancy for translators and interpreters, but obviously [laughs] we never got anything like that, so.

Father: [laughs] No, to be honest. Were very laid back about the whole situation. I mean, it was a concern when we first were told that obviously if we had any more children, they had a one in ten* risk of becoming fairly sick and ill. Obviously that concerned us. And the time from waiting for the results to come back to see if we both were carriers or one of us was a carrier, that was quite, you know, but ‘

Mm. So you didn’t get into all the discussion about whether a baby who’s got the condition would need blood transfusions and ‘?

Father: We were told that, and obviously if that had been the situation, wed have took the decision whether we were going to have any more children or not. But waiting for the results and whatever, it was – you know. [Baby noises.]

Was it easy to sort of put that to the back of your mind, or did you already start thinking, you know, ‘What if? Would we go ahead with the?’

Father: No, the first twenty-four hours were like that. After the first twenty four hours, wed spoke to the midwife and wed been, wed spoke to the lady from [city]. And they both put us, put our minds at ease, really. They said that at the end of the day, until we get the results, theres not a lot we can do. Well have to see, just wait and see what happens, so that’s what we did.

And did you both have blood tests at the same time?

Father: Yeah.

Was that okay or was it ‘ what was it like having the blood test?

Father: I’m diabetic anyway, so I have, I test myself, and needles I’m used to that anyway. So [wife] wasn’t over–

Mother: Yeah.

Father: -over the moon, were you, with the blood test, but it’s something you have to have done, so.

Did you not find it very nice having the blood test?

Father: You didn’t.

Mother: No.

Father: You don’t like needles, do you?

Mother: No, I don’t like, I hate them.

Father: I think anyone who’s not used to needles it isn’t a very nice – but it’s part and parcel of it, and you’ve got to have it done, haven’t you? If it’s going to benefit your baby.

OK. And then how long did it take for the results to come back?

Father: They were quite good to be honest, within, within a month, it was all done and dusted, I’d say. And no problems, my wife was the carrier. I wasn’t a carrier. So were all right. The only thing weve got to be concerned about is as he gets older, if he meets somebody it’s obviously – I think they come back to us when hes fifteen, sixteen, anyway, and say, you know, coach him, talk to him and explain to him what he needs to do as and when he has a partner. So weve been quite lucky really, compared to other people, I suppose. It hasn’t affected us. We can have more children without the risk.

* Footnote the risk of having a b

Had you, either of you heard of the condition before?

Father: No. I’ve heard of sickle cell but not actually haemoglobin E. It was all new to us, a bit out of the blue.

So tell me what happened from, from sort of the heel prick [Baby noises]. Did you know what they were testing for when they did the heel prick?

Father: No, not at all, it was something they said everybody was having it done. They said it was a fairly new thing but it had to be done. Obviously you’ve told us that we didn’t have to have it done, but at the time we weren’t led to believe that. We were told it was all part and parcel of it. They did it. The next thing we had a letter from a lady in [city], not even the midwife didn’t know at the time we were told. We had the letter and then obviously we got in touch with the midwife, and then shed heard at the same time.

So nobody actually rang you and talked you through it? It was just a letter?

Father: Just a letter. Yeah, just a letter.

What was that like getting that letter?

Father: It was a bit of a shock, because obviously it said that perhaps if we were both carriers we couldn’t have any more children, or if we did theres more of a risk.

Footnote no-one has to have screening if they do not want to – it is a choice. Being a carrier does not prevent you from having further children, but this couple would not have wanted to try for another baby if they had discovered he was also a carrier of sickle cell or beta thalassaemia. (If both parents are carriers of haemoglobin E, however, there is no risk to the child’s health).

Father: They were quite good to be honest, within, within a month, it was all done and dusted, I’d say. And no problems, [wife] , my wife was the carrier. I wasn’t a carrier. So were all right. The only thing weve got to be concerned about is as he gets older, if he meets somebody it’s obviously – I think they come back to us when hes fifteen, sixteen, anyway, and say, you know, coach him, talk to him and explain to him what he needs to do as and when he has a partner. So weve been quite lucky really, compared to other people, I suppose. It hasn’t affected us. We can have more children without the risk.

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: Wed 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.

Had you, either of you heard of the condition before?

Father: No. I’ve heard of sickle cell but not actually haemoglobin E. It was all new to us, a bit out of the blue.

So tell me what happened from, from sort of the heel prick [Baby noises]. Did you know what they were testing for when they did the heel prick?

Father: No, not at all, it was something they said everybody was having it done. They said it was a fairly new thing but it had to be done. Obviously you’ve told us that we didn’t have to have it done, but at the time we weren’t led to believe that. We were told it was all part and parcel of it. They did it. The next thing we had a letter from a lady in [city], not even the midwife didn’t know at the time we were told. We had the letter and then obviously we got in touch with the midwife, and then shed heard at the same time.

So nobody actually rang you and talked you through it? It was just a letter?

Father: Just a letter. Yeah, just a letter.

What was that like getting that letter?

Father: It was a bit of a shock, because obviously it said that perhaps if we were both carriers we couldn’t have any more children, or if we did theres more of a risk.

Footnote no-one has to have screening if they do not want to – it is a choice. Being a carrier does not prevent you from having further children, but this couple would not have wanted to try for another baby if they had discovered he was also a carrier of sickle cell or beta thalassaemia. (If both parents are carriers of haemoglobin E, however, there is no risk to the child’s health).

Are you glad you found out? Because I mean in a way you need never have known, in a sense, because hes not ill, you’re not ill.

Father: Well, weve been fortunate because everything’s gone our way. If things hadn’t gone our way then definitely I would have wanted to know. Weve been lucky that everything is OK, and it hasn’t made a great deal of difference to our lives. But obviously if, you know, we had both been carriers, theres a risk to a child in the future then, yeah, definitely, definitely.

So what would you say to other parents thinking about’?

Father: Well, anything that benefits you and your baby, definitely, 100%, have it done. Because at the end of the day if you don’t know there is a problem and you could have done something about it, you’re only going to kick yourself and feel gutted at a later time. So, definitely.