Interview 27

Brief Outline:

Newborn screening showed the baby was a haemoglobin E carrier. The mother was also found to be a carrier, but the father was not affected.

Background:

Married couple with one child aged 4 months. Father aged 35, market trader. Mother aged 29, full-time mother. Ethnic background/nationality' father half Arab, half White British, mother Thai.

More about me...

This couple discovered from newborn screening that their first baby was a carrier of haemoglobin E. Both parents were also screened, and the mother was found to be a carrier. The father is not a carrier. The mother was not aware of any family history, and in Thailand there is very little awareness of these conditions. None of her family have since been tested.

When they first got a letter telling them the baby was a carrier they were very shocked, and felt it might have been better to be told the results in a phone call so there was someone who could answer their immediate questions. At first, they were afraid they might not be able to have any more children, but they managed to speak to a genetic counsellor within 24 hours and felt better informed and reassured after talking to her.

If they had found he was also a carrier for sickle cell or beta thalassaemia, they probably would have decided not to have any more children together. (If both parents are carriers of haemoglobin E, however, there is no risk to the child's health). They would not want to terminate a pregnancy, so for example did not have antenatal screening for Down's syndrome or spina bifida. However, they feel that it is better to avoid having a baby if you know in advance there is a high risk of the baby having a particular condition. When he is old enough, they will make sure their son knows he is a carrier of haemoglobin E before he chooses a partner.

For the mother, language has been an issue, both in pregnancy and when they got the screening result after the birth. She has come from Thailand recently and does not yet speak English very well, and her husband cannot translate the information into Thai. The midwife managed to find some written information in Thai about haemoglobin E from the internet. This was helpful, but ideally they would have liked more written and spoken information in Thai. Resources were not available to provide them with an interpreter. This would have been especially useful during labour. Instead, a Thai friend came to the delivery to give her support.

 

Any test that gives you information about your baby's health is definitely worth doing.

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

Father' Well, we've been fortunate because everything's gone our way. If things hadn't gone our way then definitely I would have wanted to know. We've 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, there's 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.

If they had both been carriers they would have had no more children together.

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 we're all right. The only thing we've 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 he's 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 we've 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' 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.

They had never heard of haemoglobin E until they discovered the baby was a carrier.

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 she'd 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 there's 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).

It was easier to understand what being a carrier is once they talked to a counsellor. The midwife helped them find information in Thai.

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], we're 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 we've asked all the way through the pregnancy for translators and interpreters, but obviously [laughs] we never got anything like that, so.

It was worrying waiting for their results and wondering if they'd be able to have more children. It was a relief that only one parent was a carrier.

Father' [laughs] No, to be honest. We're 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, we'd 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, we'd spoke to the midwife and we'd been, we'd 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, there's not a lot we can do. We'll 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 we're all right. The only thing we've 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 he's 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 we've been quite lucky really, compared to other people, I suppose. It hasn't affected us. We can have more children without the risk. 

Professional learning: They had the heel prick test believing it was compulsory. The results took them by surprise.

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 she'd 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 there's 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).

Professional learning: They really needed to talk to someone directly about their results, and they needed help from interpreters.

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 , we're 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 we've asked all the way through the pregnancy for translators and interpreters, but obviously [laughs] we never got anything like that, so.

Professional learning: Access to an interpreter would have helped, as his wife speaks very little English.

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, we're 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 we've asked all the way through the pregnancy for translators and interpreters, but obviously [laughs] we never got anything like that, so.