Interview 15- Screening for beta thalassaemia

Age at interview: 36

Brief Outline:

Father knew he was a beta thalassaemia carrier. Mother discovered in pregnancy she was also a carrier. Couple had CVS and were told the baby had beta thalassaemia major. Since birth the baby has been well and has not needed transfusions as expected.

Background:

Married couple, with one child aged 14 months. Mother aged 36, father 35. Both are solicitors. Ethnic background/nationality: White British.

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They would have liked more direction from health professionals when making difficult decisions about whether to have an antenatal diagnostic test.

 Father - And, and my recollection is when we, when we got the letter it was, it was a sort of terrible shock because we weren't warned. We knew, we knew that obviously the blood test was, was, that it had taken place and, and the samples were being tested. 

But we got this letter. And things did move very quickly, didn't they? I mean that, you know, the next day the nurse was coming and I mean it was a, it was a very sort of confused night really, wasn't it? We were very nervous, because we knew the, you know, we knew what the odds were. And I think my recollection of going for, to the hospital to see the genetic specialist, it was very, it was very other-worldly. I remember sort of almost as she was talking to us about the testing and the results, it was almost as though she was talking to us and I was almost looking over my shoulder as to, “Who is she talking to?” Because it felt so, I felt so detached from it. And I think, I never felt pressured that we should have, we should do any particular course. We, I never felt that we should have a CVS, although we were aware that the sort of the time limit was, was on us almost. They wouldn't be happy to do a CVS after a certain time. 

 

But the abiding feeling I had really, apart from feeling that it was almost, that we were, they weren't talking to us, was that you almost wish that somebody would help you and sort of say, “Well, I think you should do this.” But of course they, they wouldn't, they wouldn't say either way, “We think you should do this. We think you should do that.” And it was very, it was very difficult, wasn't it? I think it was just the two of us and we were agonising over things. And, just because of the timing of it all, we didn't - I mean it wasn't the hospital's fault - but we felt very pressured that we, we had to sort of make a decision, “Should we have the test? Should we, should we not have the test?” 

 

And I think I was sort of quite firmly of the opinion that if a child had a condition such as Down's syndrome, as well as full-blown thalassaemia that it would be just too, it would be too much to inflict upon somebody. And we did have, and we did have terrible guilt about what we were doing. Even sort of continuing with the pregnancy, I think we felt that we'd made the decision almost for us that we wanted a child, but you know, the child didn't have any choice as to being born with such a condition.