Screening for sickle cell and beta thalassaemia

Interview 01

I’m interested in sort of what, what made you both willing to have screening in the first place. Was it something you hadn't thought about at all and it just seemed like everybody did it?

Well, I know that is the norm in this country, that once you are pregnant, all pregnant women have to take the screening. So, well, when her GP actually said she was going to take the test this day or that day, I didn't think of even saying, 'Oh no, don't go.' It's, I think it's I took it as normal, you know, a normal thing. So, I never thought of not going. Never. Yeah. I never thought of it. I think it's a normal, normal thing. But to tell me to go for the screening without the pregnancy, then I don't think I would have gone, because I always think I'm strong, I'm not sick.

Interview 13

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 there's nobody I know who had this sort of problem. So, I just, I mean in the pack there's 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.

Interview 15

I went in for a tonsillectomy and a blood test revealed - they said it was, I suppose being white and, and the city I come from, I was quite a novelty really. They'd, I don't think they'd seen a white child with, with thalassaemia. So, they went back through, my two brothers don't have thalassaemia, but my father does, which sort of probably accounted for his sort of often fatigued - you know, after, after a hard day's work he was often very drained. And I was the same as a child. And so all, all really, we were told at the time, it was, it was like, 'It won't have any effect. It won't really bother you.' I think I was told I shouldn't be a deep-sea diver or a fireman because of oxygen tanks and things. And all I remember the doctor saying is, 'You'll be fine. But you shouldn't marry a Greek girl, because girls from Greece may have this.

Interview 02

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’s name] 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?

She was a lovely lady and she did do it very well, but as I said it was a very big shock.

Well, the lady at the sickle cell medical centre, I've forgot her name now, she explained it in great detail.

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.

Interview 19

Well, my, [pause] my advice would be just do it. Just do it. I mean, if not for the parents, if not for the effects that it might have on the parents themselves, think about the future quality of life that the children are going to have.

Even if, at the end of the day, one decides to go along with the pregnancy, then you are prepared. You know what you’re in for, you know how to manage it, you know how to manage yourself. You know, you are aware of the care and support around you, you've prepared yourself. So, it's, it's the best decision any mother can make, any parent can make. Especially when you have something like sickle cell to deal with. I have only been lucky. Suppose I wasn't. I've had families that have died just because they don't have the care, support and medical support that they should have gotten to deal with it.