Interview 06

Age at interview: 24

Brief Outline:

During first pregnancy couple discovered they were both sickle cell carriers. CVS confirmed the baby did not have the condition and was not a carrier.

Background:

Student, single (partnered), in first pregnancy. Ethnic background/nationality' Black African.

More about me...

When the couple were thinking about having a baby, the male partner, who is a doctor, decided to have a screening test, as there were people on both sides of the family who had sickle cell anaemia. By the time he got his results and found he was a sickle cell carrier, she was already pregnant. She also went for screening, and was shocked and upset to discover she was also a carrier. 

For a long time she was very uncertain what to do, but eventually decided to have CVS to know for certain whether the baby was affected. Her husband felt more strongly than she did about the need to find out and was very worried about how much the baby would suffer if he or she had sickle cell anaemia. She did not think as a Christian she could ever terminate the pregnancy, but living with the uncertainty was very difficult. 

The CVS itself was not too painful, but the doctor was not very sympathetic, and her husband felt faint and could not stay in the room to support her as he had hoped. It was an anxious time waiting for the results and worrying about the risk of miscarriage from the procedure. She was so worried she could hardly eat or drink. She became dehydrated and was admitted to hospital. It was a great relief when the CVS results showed the baby did not have sickle cell anaemia, and was not a carrier, so at the time of the interview they were looking forward to the baby's birth. 

She would have CVS again another time to be able to prepare. She personally would not consider termination again, but thinks it is important for people to know they have a choice. The couple felt well advised and supported by their sickle cell counsellor, and felt they had all the information they needed to make their decisions.
 

Her partner had screening first and found he was a carrier. By that time she was already pregnant...

Okay, let's start with thinking about screening early in pregnancy. What discussions had you had together about what you'd do about screening?

Oh, actually it was tough because we couldn't make up our mind, because I was a bit scared. I didn't want to know the result, I just wanted to have the baby and that was it. But my partner really wanted me to have it done, because we've got some relatives that have got the disease and everything. So, well, kind of really, he was really taking it very seriously. He wanted us to have the test done, yeah

He's got relatives and you've got relatives?

Yeah, yeah, yeah.

So tell me first about sort of the discussions you had about screening?

Just tough anyway, because I was, at the moment, at that point I was in denial, because I had my education going on, I didn't want my Mum to find out and everything. But I really wanted to have the baby, but he wanted the test done, because we've got some relatives that have got the disease and everything, so. Then we decided to have it done.

So neither of you knew you were carriers before you got pregnant?

Actually before I got pregnant - maybe at the point I was, because I didn't know until I'd gone two months into the pregnancy that I was pregnant - and he had the test done but he didn't go for the result until I found out I was pregnant. So he went to the GP and they told him he was AS [sickle cell carrier]. So I had mine done immediately, and I found out I was a carrier as well.

Okay so it was, he was thinking about planning for pregnancy?

Yeah.

She didn't find CVS too bad, but her partner felt faint and had to leave the room.

Well I was just outside the waiting room, because there was a couple in there and [sighs] I didn't know, I was just, [sighs] I was everywhere, really. So when they called us in and they explained everything again, and we had to sign a consent form, and they brought a big trolley with the injection and everything they were going to use. And at that point my boyfriend freaked out and [laughs] he, he just, they had to tell him to leave. So, yeah, [laughs] he couldn't stand it, because they had some big needles and everything so, he left. And just, I think after they did the first, they had to put in the first needle, then he came back, because he was feeling really bad and guilty for leaving me alone, because he promised was he was going to be there, so, but he was shaking and the doctor had to tell him to leave, yeah [laughs].

So he had to go out again?

Yes [laughs].

Oh dear, that must have been hard for you, and for him?

Yeah, yeah but - yeah, I did it, and once they'd put the first needle in it was just uncomfortable, but the second one was quite painful and that was it that was it. It just took about five, five, ten minutes tops.

Did they give you a local anaesthetic?

Yes, they did.

Did that help?

Yeah, it's just the surface, it doesn't go inside, so you're going to feel the pressure of the needle.

What, how was it compared to what you'd expected?

Mmm, it was, it wasn't any different really, but the only thing, as I say, my boyfriend wasn't there and that was the - well, it's just a bit uncomfortable and yeah, once it's out it's out, and that's it. It isn't that bad, it isn't that bad.

When she discovered both she and her partner were sickle cell carriers, she called her mum for...

Okay. And so what, what did you both feel when you got these results?

[Laugh] Well, I was just sad really. I was sad because I didn't know what to do, I was just confused. And because I knew if we were going to have a sickle cell baby we might want to terminate the pregnancy, so that was the only thing that scared me. But apart from that I was fine. Then I called up my Mum, because she's really prayerful and I told her my situation and she was always praying for me and comforting me, and she told me that if I terminated the pregnancy she was never going to talk to me again, so [laughs]. I just - yeah, you know, we just kept on praying and hoping for the best.

She took a long time to decide to have CVS. She became ill with worry and in the end decided it...

But what, what made you decide that you wanted to have the CVS in the end? How did you, how did you end up agreeing together?

Because I knew it was going to make him more comfortable, as in adapting to the whole situation, because it caught him unawares that I was going to have a baby and everything. And so I just wanted to do it for both of us, really, and for every member of the family, so we can carry on with the pregnancy.

Okay, so you went for the test and then you find out you're both AS [sickle cell carriers]?

Yeah.

So then did you have another period of having to think whether to do anything else?

Oh, yes. When we found out that we were both AS, I was just thinking that [laughs] we could have done that earlier, so we could have gone our separate ways instead of [laughs] having the baby. But yeah, when we found out I just decided to go for the test and just - because I was depressed, I wasn't eating, I could go a day without eating and everybody was worried about me, so.

With just the not knowing?

Yeah. So I just thought it's better to know than not to know and just be in denial, so.

What, what were you feeling about the risk of miscarriage from the test as against finding out? Did that play much of a part for you in the decision?

Mmm. At first when I was told there was a little risk I was a bit scared, but I was told it's just like one percent, so that's a bit low, so I wasn't really worried about that.

Waiting for the CVS results seemed like a death sentence, and she felt very ill. Being told the...

What was it like waiting for the result?

[Laughs] Oh, it was like I was waiting for a death sentence or something like that so, yeah. And I got the call. And actually they called me and they dropped a message. So I went into the kitchen, before I got back my boyfriend gave them a call, so he found out before me and they told him the baby was AA [not a carrier]. So [laughs] instead of calling me he called his Mum all the way in Nigeria to tell, tell her about the good news, yeah. And when I came in he was happy and, yeah.

So great celebrations?

Yeah, that was the turning point for us, yeah.

Had you talked about it much in between the test and getting the result or did you just?

Yeah, we just left it like that, yeah, really. Because I think - now, after the day I did the CVS I was in pain. I don't know, because I wasn't eating, I was so depressed and everything, so for the second day I couldn't stand up, I was in pain, I was dehydrated. So I was taken to the hospital. I was an admission. So during the period while I was waiting for the result I was in the hospital, so.

Oh gosh.

Yeah.

So were you worried that you might be miscarrying?

Yeah, actually I was. But when I got to the hospital the doctor saw my lips, he just said I was dehydrated because I was not eating, and once I ate I couldn't keep it down, I just kept throwing up. I think it was due to I was doing a lot of thinking and everything was just, everything was just terrible at that point. So I think, and then I knew it wasn't anything to, it didn't have anything to do with the CVS, but my own state of mind, so.

Footnote' there is a small risk (around 1%) of having a miscarriage after CVS or amniocentesis. AA means normal haemoglobin.

Having seen family and friends with sickle cell anaemia, she felt if her child had the condition...

And on the other side what kind of impact was your personal knowledge of the condition having on your thinking?

Yeah, I think it helped a lot, because I never saw sickle cell as a big deal. The only time I really feel the pain is when they're having the crisis, and once it's gone they're back to normal. Then back in Africa you see something as little as malaria killing off people, and when you see someone with the disease living for up to forty, fifty, sixty years, so, it's just the way you take care of yourself and you have supportive family and friends there, so. It wasn't a big deal to me, it wasn't at all, because of I've lived around people, I have a friend that has got the disease and she had a baby last year, and so she's fine, she's fine, she's doing well.

Except you were also saying that at some points in your thinking you were thinking you didn't want your baby to go through that'

I, no.

having seen it?

Not at all, not at all, but I knew if I had a child with the disease I could take care of it. So, I was prepared, I was prepared. But it was just the problem of my partner. He wasn't really ready, because he said he can't handle seeing his child going through such pain, and that was it. It's not like he was discriminating against sickle cell or anything, but he's this kind of person who doesn't like to show emotions, and so, and he doesn't know how to deal with it, so he would rather not have a child like that.

Professional learning' She was very satisfied with the counselling she received. She had not...

And what were your general feelings about the service that you got at the counselling centre?

Oh, just fantastic, yeah. It's fantastic. And so I think that was what helped me make up my mind, I think, to make a decision to go and have the CVS done.

Tell me how that it helped you?

Because I didn't know that you only get one in four chances of having a sickle cell child, so I just thought it's either you have AS [sickle cell carrier] or SS [sickle cell anaemia] child. I didn't know you could even have an AA [not a carrier] child. So she explained everything and, yeah, it really enlightened me, so yeah. And I just thought, 'Okay, one in four chances, [laughs] I might as well take a chance here.'

Do those risk figures kind of mean anything to you, I mean when someone says 'one in four'?

Yeah, because she did a little diagram, and so I knew I only had, I only have a chance of having an AA or an SS, and I have two chances of having an AS child, so it's quite high for me at that point. I needed something, yeah.
 

Professional learning: By the time she realised she was pregnant and had screening and...

Is there anything that you'd want to say to other parents from your experiences or to health professionals about how to counsel people?

Nothing really. I think they're doing a great job, I think they are. But it was just the doctor that did the CVS, she was just, she was a bit nonchalant about it. Maybe it's because she was stressed or something, or she's done a lot during the day, but she wasn't really that supportive.

Tell me more about that.

Because when I got there I think I was seventeen weeks pregnant or something when I did it, so she was more worried. When she heard how many weeks I was pregnant for, she was, she had, she left the room, she went to consult with another doctor if they should do the CVS or they should do the amniocentesis or whatever. And when she came back she was like, oh, she was going to go ahead with the CVS, and she was just moaning about me waiting for that long before I came to have the test done. So she didn't really know who I went to, how long it took me to make the decision - and this is NHS we're talking about, it takes a while before they can book an appointment for you. She wasn't really ready to listen, that was the only point. I was just like, 'Okay she doesn't know what I'm going through, so why she should be talking to me like that or something?' But every other person - because I had another doctor who, she did sort of like a counselling and gave us information and did some blood tests a day before I went for the CVS. She was really supportive as well, but every other person was quite helpful, apart from the doctor that did the CVS.

What, was it partly because you, you needed time to think about it that you took - I mean, I don't know what the time gap was between finding out you were a carrier and having the CVS?

No because, I didn't know I was pregnant. I felt some changes in me, but I wasn't sure I was pregnant, so until I had the test done and I found out I was pregnant then the GP couldn't book me in until like a month for the antenatal, so everything just kept prolonging, after then. I had a month before I could register for antenatal. Then the lady that was meant to do the counselling at the sickle cell centre went on holiday, so they had to look for someone else. So everything just cropped up and so it prolonged the, the CVS so.