Interview 02

Age at interview: 22

Brief Outline: Discovered she was a beta thalassaemia carrier from routine screening during pregnancy. She was not aware she was being tested. Partner was tested and is not a carrier.

Background: Married, full-time mother, in first pregnancy. Ethnic background/nationality' White British.

More about me...

This mother was not really aware that one of the blood tests she had during pregnancy was screening for beta thalassaemia, so she was shocked to receive a letter saying she was a carrier. She then discovered that her mother was also a carrier, but had not realised it was important for her daughter to know this. Her mother's father came from the Greek Cypriot community.

She felt she was not very well informed by her midwives, but her specialist sickle cell counsellor explained everything very clearly. Her partner was also tested, and it was an anxious time waiting for the results, but they were relieved when the counsellor rang to say he was not a carrier. 

Even if her partner had been a carrier, she felt she would have continued with the pregnancy anyway. However, she is glad to have found out, and believes screening is important. She feels it is important for people to be more aware of these conditions, and to know that they can affect white people too. 

Although being a beta thalassaemia carrier does not mean she has the condition, she has been advised that some women who are beta thalassaemia carriers may be mildly anaemic. Doctors and midwives caring for a woman during pregnancy need to know this, so they can manage her iron levels appropriately and not give her unnecessary iron medicines. Beta thalassaemia carriers need a special blood test to check their iron levels during pregnancy.

She did not realise she was being screened for beta thalassaemia, so was shocked to learn she was...

So did, when they took all these blood tests, did you know what any of them were for?

No, they just took them. They didn't say, they just wanted to check I think the iron levels and things like that, and that's how it came about. But they did take more blood than usual on one occasion. I didn't know why, but they just had to check everything, but it was alright.

Have you ever looked back over any of the stuff in your notes, did it say anywhere in the written information this is what they were doing, as far as you know?

No [pause] no.

So this was a complete out of the blue shock?

Yeah, definitely.

And did you know anything about thalassaemia?

A little bit, because they do put a little booklet in about it, but you know they don't exactly tell you you're going to be tested for it. As far as I was aware, anyway [laughs].

She had no idea what beta thalassaemia was when she got her results. The 10-day wait for her...

Well I didn't know I was actually being tested for that but I did have a lot of blood tests, every time I went to see the midwife and at my antenatal, you know, times when I went there. And basically they took some blood, as they usually do, and then I had a letter saying that I had the beta thalassaemia trait. And obviously I didn't know what that was because I've never heard about that before. And they arranged an appointment to go and see a lady at the centre to, you know, obviously talk more about it. 

So obviously I went there and she just went through everything saying that, you know, my partner needed to be tested, because if he had the same that would have affected the baby, where he would have actually had it and been very ill, and you know, even talking about sort of termination and things like that, which wasn't very good. Because obviously I didn't know anything about it really, and it was pretty scary [laughs].

I got very emotional and was crying, you know? Because we didn't know we had to wait for [husband] to be tested, which took about ten days. And then we had to go on that result, but you know, luckily enough it was all right in the end. But it wasn't very good waiting, really, to find out if the baby had it or not, because obviously you worry. Because obviously the baby would have been very ill if he did have that.

Footnote' the word 'trait' is sometimes used to describe carrier status. Even if both parents are carriers, the baby may not inherit the condition. The baby has a 1 in 4 chance of having the condition, a 1 in 2 chance of being a carrier, and a 1 in 4 chance of not being a carrier.

Her mum (who is part Greek-Cypriot) knew she herself was a beta thalassaemia carrier but did not...

And while you were waiting for the results, did you talk - well, like, you must have rung up your mum?

Oh yeah, I was ringing up my mum, because obviously she didn't tell me that she had that. And then she obviously said, 'Oh, it's probably from me, you know. I did have that.' And I said, 'Well, you know, why didn't you tell me?' sort of thing, and she said, 'Well, I didn't think it would sort of apply to you.' But obviously it did, so - but we was all very worried, very worried.

And was she able to tell you anything about the condition from like her family?

[Laughs] Not really.

No?

No, just that she probably got it from her father, but she didn't know her father, so that's probably why she didn't really know too much about it.

Okay, so she didn't have any family experience of people actually having the condition?

No.

What, did she have a view about what you should do?

Yeah, she just wanted to obviously make sure if baby did have it or not, and if he did obviously we'd all probably talk about it and take it from there, because I do ask - you know, I'm very, very close with my mum, so you know, what she says I do listen to really.

She did not realise white people could be affected by sickle cell or beta thalassaemia until she...

Yeah I mean, when I was speaking to the lady when I had the appointment, she said that - is it Caucasians? They can get it. Because I thought it might have just been, you know, Mediterranean people and African and, you know. But she said you know, Caucasians, some of them get the, you know, condition. I was quite shocked about that really. So anyone could get it, you know?

So, important for people to know more about it?

Yeah, because if your partner's got the same thing, you're going to be in a bit of trouble, really.

What more kind of information do you think there ought to be around thalassaemia in the community? What would you like to see?

Well I was quite ignorant, because I only, as I said, I only thought it was sort of you know, black people, African and that, that had sort of like the, you know, blood disorders. But it's not. It's , you know. Anyone really, any type, religion - whatever - can, can have that. So I think it is important to, you know, get tested really. They should make a little bit more sort of, I don't know - they should sort of like say that at the start from when you're pregnant, and test you probably during the beginning of it, instead of leaving it five months.

Professional learning: She did not know what all the blood tests in pregnancy were for. It did...

So did, when they took all these blood tests, did you know what any of them were for?

No, they just took them. They didn't say, they just wanted to check I think the iron levels and things like that, and that's how it came about. But they did take more blood than usual on one occasion. I didn't know why, but they just had to check everything, but it was alright.

Have you ever looked back over any of the stuff in your notes, did, did it say anywhere in the written information this is what they were doing, as far as you know?

No [pause] no.

So this was a complete out of the blue shock?

Yeah, definitely.

And did you know anything about thalassaemia?

A little bit, because they do put a little booklet in about it, but you know they don't exactly tell you you're going to be tested for it. As far as I was aware, anyway [laughs].

No, I mean I must have seen about twenty different midwives. I didn't always see the same one. And to be quite honest, you know, I mean I - even though it's not about this - they didn't, they don't really explain too much. They just get you in and get you out again, then they tell you things when they've already done it without asking, sort of thing, so you know [laughs].

Has that happened on other things as well?

Oh yeah, definitely.

What kind of other things?

Just explaining about the pregnancy, you know. No-one sort of told me any classes or anything like that I could go to. They just sort of get you in and get you out again, really, which hasn't been very good [laughs].
 

Professional learning: She has been advised that her iron levels need careful monitoring during...

Yeah, I had a word with the midwife, because every time I go they have to check my iron levels, because they were really, really low, and that was obviously to do with the [beep noise] beta thalassaemia trait. So you know, every time I go they take blood. And what they, they've given me some iron tablets to take, because they said that I'll probably bleed more than the average woman would, because of the blood disorder. So they don't want to get the iron levels too high, but then they don't want them too low. They just want to sort of get them in the middle, so they're sort of really keeping an eye on that at the moment.

Has anybody kind of tried to explain that to you or?

Not, not really, I mean, you know, you ask different, I mean different midwives say different things. But the last two I've spoken to, they've sort of said the same thing. I mean, you can live with it but it might make you a bit tired, and obviously your iron levels are lower than someone else, you know. Because my mum has got the same thing really. She gets very tired a lot, and I think it's to do with her iron, because obviously she's got that as well.

Footnote' Although being a carrier does not generally affect your health, beta thalassaemia carriers may become more tired and anaemic than people who are not carriers, but they need a special serum ferritin test to determine their iron levels, before any iron is prescribed. This is particularly important during pregnancy. If a doctor does not know that a person is a beta thalassaemia carrier they could prescribe iron medicines which, in the long run, could do more harm than good. It is therefore useful to have a card to show to health professionals stating that the person is a carrier.
 

Professional learning: Her midwife did not tell her much about her results, but the specialist...

Well, the lady at the sickle cell medical centre, I've forgot her name now, she explained it in great detail, as the midwife didn't really go into it. I suppose they just left it for them to do, really. But they should have gone into a little bit more about it really, because they do know about it. So they should have explained it, about it more and said, 'Right, you know, you're going to have an appointment. This is what they're going to say,' you know, but they didn't. So the lady at the clinic went into everything in detail. She was really nice, a very nice lady.

And did you und-, feel you understood her?

Oh definitely, yeah, because she'd go through it a couple of times and she'd say, 'Look, you know, do you understand that? Otherwise we'll go through it again.' And she had a little diagram and, you know, wrote everything out and yeah, she was marvellous, really nice. Even though I was upset at the time, she was a nice person and, you know, she explained everything in great detail. And if my partner did have the condition, she would have obviously helped with support and, you know, going through all the bad bits, should we say [laughs].
 

Professional learning: The counsellor was very helpful. It was frightening to discuss termination...

Well they, the lady went through all the, explained sort of like about all the red and white blood cells, and explained sort of in depth about it, and as I said before what would happen if me and [husband] were carriers, what would happen to the child. It would be very ill, and what the options were and everything. But she said, you know, we have to just wait and see really. But obviously if we both were carriers, she would have obviously set up some sort of counselling and what our options were and stuff, you know?

And even at that appointment she talked to you about?

Oh yeah, very in depth about it.

And about the possibility of termination?

Yeah, that's what really frightened me a lot.

Would you rather she hadn't mentioned it at that point?

Not really, because it frightens the life out of you, to be quite honest. Because it's all a big shock. You go there and you don't expect, you know, that to be as bad as what it is really. But I suppose they have to tell you to prepare you, really, for the worst.

Was there anything that, about the way that the information was given to you that you would like done differently, or were you happy with it?

No, she was a lovely lady and she did do it very well, but as I said it was a very big shock, the way she was just very direct and blunt about it, really. 
 

Professional learning: When she got a letter saying she was a beta thalassaemia carrier she was...

So when you got that letter, what were your feelings when it came through the letter box?

Well, as I said, I was terrified, I didn't know what it was all about. And you know I just wanted to, you know, get to that appointment and see what it was all about, to be quite honest, because I was a bit worried about that. Because obviously, you know, it's when you're pregnant you don't know sort of what to do, really, with things like that.

And did you talk about the result with your partner before you went to that appointment, or did you not know at that point that he was going to be involved?

No, I didn't.

They did say on the letter about having your partner come along, so he knew he had to come along to that. So we both went along together to the appointment, to see the lady, and she went through everything and explained all about the red and white blood cells and what would happen if baby got it, and you know, what the options were, really. And then they took my partner's blood, and then we just had to wait, really.

What was going through your mind in that waiting period? Were you thinking what you'd do if the result came back positive?

Yeah, if it had come back positive I would have definitely continued with the pregnancy, definitely, and just dealt with it, really.

What made you think that?

Because I felt it had gone too far, really. You know, when you're seeing baby's heartbeat on the screen and things like that, you can't sort of, you know get rid of that really.