Interview AN27

Age at interview: 24

Brief Outline:

Healthy pregnancy, routine screening. Some blood test results came back abnormal. Levels of information and choice have been a concern.

Background:

Children: First pregnancy, interviewed when 7 months pregnant, Occupation: Mother - nursery nurse, Father - telesales worker, Marital status: Single, partnered.

She did not feel she had much choice about screening and would have liked more information and explanation.

Would you go through it all again, all the screening?

Yeah, I would, I would.

Did it ever cross your mind not to have any of it?

No, I just, to be honest, I just followed what I was told to do, to be honest. I think if I was to go through it a second time maybe I'd say I'd have more of a choice and say, 'I don't want this' or 'I don't want that'. But because it's my first time and I don't really know what I was doing, I just went for everything that I was told I had to go for.

And that's how it feels like, that you're just basically, you were told?

Yeah.

And not much choice or decision?

No.

Is that right, do you think? I mean, how should it be done? What would you say to health professionals, looking back over your experiences?

Because even though my friends had been through it and they can tell me what they had been through, everyone's different, so I would have liked maybe my doctor or my midwife to sit down and say, 'Well, you're pregnant, how do you feel about it?' and tell me what we're going to do in every stage, and explain every stage to me, so at least I know what I'm going through. 

Most of the things, I've been learning through books or like, or asking my friends questions. But at the end of the day everything's different for everybody else. But I would have really liked someone to sit down and explain a lot of things to me. 

That's why I'm glad in a sense that I've had my partner's mum, because then she can explain certain things that I was stuck with and she recommended certain things to do, for me to do as well. So I'm really glad that I had her but if, if I didn't then what do you do if you're by yourself and you haven't got nobody? You need someone like that to help you out, or just explain things.
 

She talked about the impact of sickle cell disease on her friend's family and how it would affect her own thinking.

Have you had friends who've had the sickle cell screening?

I've had a, she must be , I've had a, my friend who I grew up with, her big sister had sickle cell and she gets it really bad because I think on her second child they were recommending her not to go through with it because she gets so much pain.

But she did go through with it. My friend, I'm not, I know she's meant to go for screening but I'm not too sure she's gone because she's kind of frightened about finding out if she's got it or she's carrying it or not. But I know she's seen her sister go through it and it's kind of frightened her off.

Would you want to know if you were a carrier?

Yeah.

So, you'd actually quite like those blood results back?

Yeah.

What would you do, do you think, I mean if, it's hypothetical but if, if somebody had told you that you were both carriers for sickle cell, what do you think, how would it have affected your thinking about the pregnancy?

It would frighten me more, I think I'd think about it more. But as I know it's a 50'50 chance - because sometimes even though you're a carrier the child might not necessarily get that, so it's, but it would kind of maybe alter my decision as well, or maybe make it, make me take a little bit longer.

Thinking about whether you'd go ahead with the pregnancy?

Yeah.

Footnote: A separate site on 'Screening for sickle cell and beta thalassaemia and other haemoglobin variants' is also available. 

For first-time mothers it is difficult to know what questions to ask and what information you need.

I mean, is she approachable, can you ask her things?

My midwife? Yeah, she's very nice and approachable, but I just find it, because it's my first I don't know kind of what to expect. I only get, know what to expect if someone maybe asks me, 'Well, have you done this?' and I'm like - or 'Well, has your midwife asked you this?' - and I'm like, 'Well, she hasn't to be honest'.  

So now when I see my midwife I go and ask her, 'Well has such-and-such happened, and how do I do such-and-such at certain times?'  Because when I normally see my midwife I get checked for the normal checks like a urine, my blood pressure and the position of the baby, but she doesn't ask me any other questions apart from that, to be honest, which I find hard.

Why do you think that is? Is that because she thinks you're young or what?

I don't know, I really don't know. Because it's my first time and I don't know what to expect and I don't know really know how it works.

And you don't know what you don't know?

No exactly. So I'm glad that I've got [partner's] mum because she's a midwife. Any questions I do have, I've been asking her, which has been very helpful to me as well anyway. So I don't know.

It's not ideal, is it?

No.

So what information were you given about screening tests, and I'm thinking about blood tests as well as the scans?

I wasn't given, I think I was given, I was given a leaflet. I read that.

And that was at what stage?

That was, I think that came as part of my pregnancy pack when I went to the hospital, and I saw a doctor and they took my blood and urine, and that day I was given a pregnancy pack and that came as part of it. Scans, she didn't, she, yeah she told me a little bit about scans and how they work, yeah, and we didn't talk, we didn't talk much about screening at all.

So nobody kind of said, 'Do you want screening?'

No, and like I said, because I don't know what to ask for and what to think, I wasn't, I didn't really ask for a screening.
 

The 20-week scan was a lovely experience. She had an internal scan because of the baby’s position, but did not mind.

And that 20 week scan, where you can actually see legs and arms and a face. How did it feel like seeing the baby on the screen?

That was nice actually, that was really nice. Me and... - my partner didn't come with me to that one, because he was at work and he couldn't get the time off - but his sister came with me. And we were still, we were looking to try and figure out the sex still, and just to see the baby - because she was trying to get one of the face, and the baby kept on hiding, hiding his or her face. 

So every time she went there he would just cover his hand, cover his face with his hand. And you could see it kicking its legs. I found that, I can't think of a word. I think it just may mean, some time, even though when I was three months I know I'm pregnant, but I think I actually felt more pregnant after seeing that second scan. I actually thought, 'Oh my God, I'm going to be a mum' and it started actually really sinking in after seeing that.  

And she even had to, because the baby was hiding his or her face, I had to get a, - oh, I don't know the name for it. She had to put something up me instead, because the head was down here, so that was the only way that she could. Because she turned me on my side, I went on the other side and he still, he or she still wasn't moving, so she had to put that up me just to find out if the head was all right but she said that everything was fine. 

I didn't mind. I thought, when she first said that I thought, 'Oh my God, it's going to be like a, a smear test.' And then I didn't even really feel that it was really up there. And she was moving it about and taking the head and she said, 'Oh yeah, well, the head's fine, it's the right size and your baby's at the right size' and everything else, and then took it out. 

But I didn't, it didn't really bother me. I think I was so excited anyway seeing the baby on the computer that I think, it didn't really bother me at all, I didn't really think about it.
 

She was still waiting for some blood test results to come back months later, including for sickle cell disease.

Yeah, I had eight of them taken and she explained what some of them were for, to check for rubella, my blood count cells, I think it was, and to check for the Down's syndrome and other things. I also had a problem with that though, because I only got my results last month back. 

Because normally you're meant to see the midwife and she was meant to, every time she went to get my results she couldn't see anybody. So it's only, I - well, she said that 'How come you haven't got your blood?' And it should be written in the back of my book and it wasn't, so she had to keep on chasing them to get it back.

So when she did get it back she did go through it with me. I had to, I asked her about it, and my red blood cells are low and my iron is low, so I'm taking iron tablets at the moment now, but that could have been done ages ago if they had - you know, because I took these blood results in July and we're in January now.

And is that also the case with the blood test for Down's syndrome risk, that came back late?

No because it was taken the same time I had these - but because there was, they sent it in the post I already got that anyway, so I knew about that, so that one wasn't a problem. It was just my blood results that I didn't get back.

And what about sickle cell, thalassaemia - have you had screening tests for?

That was also done the same time as well, but I haven't had any results back about that. I haven't had any results back on that neither.

Footnote: A separate site on 'Screening for sickle cell and beta thalassaemia and other haemoglobin variants' is also available.