Antenatal Screening

I don't know everything that they take. I mean I know that they're, the first time that I went to this private doctor, he tested for all sorts of things. I mean all sorts of diseases and whether I had antibodies to certain things. So I knew that there were just a bunch of tests being done at that point.  

Since then, I know that they check, with me they check for specific things, like they check my thyroid every couple of months just to make sure that it's doing all right. And I know that they checked at one point, they double-checked my blood type. I guess that that could be a problem or at least something that they want to make certain about.

Did you have a leaflet or anything saying what all the blood tests were for?

No, I didn't, but I do have my chart, so I can see actually as the results come in what they've checked, so there's a little bit of, you know, evening's reading can be, 'What have I had done last week?' But no, I haven't had any sort of information. I think that there is a certain degree of just trust, you have to trust that the person is checking for the right blood things and doing the job that they're supposed to be doing.
 

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. 
 

My experience was very good, my GP immediately gave me all the information necessary to get, for the primark test, the blood test associated with a scan. I didn't know about it because I wasn't sure exactly what was available. I knew about the amniocentesis and all that, but I suspected that there must be other options. 

So I was quite happy to hear that there was this very early test that can tell you about Down's syndrome and other common problems. So immediately I, you know, applied for that. I called myself. There was a bit of a delay, because this was in summer, early summer - very hot weather. And they send you the tubes to get the blood sample taken. 

So I got the blood sample, sent it in the post, and it apparently didn't get there, or it took three days or something to get there, and they told me, 'Sorry, but this sample is not useful any more, it is too hot'. So I had about one or two days limit to send the sample right in the time when it had to be tested, because it's a very short period when you have to do this test. 

So, but anyway, it got there. We were travelling to my country, to Ecuador, in the few days after that, so I had the scan, I think, just the first or second day of my thirteenth week, which was just about when it had to be taken, because we were leaving two days later. 

So by the time we left I knew the results from the blood test, but not, I knew the results from the scan, which was quite good, they told me that the risks were much lower than expected for my age, but I didn't know the results from the blood test because it was not ready yet. 

But when we came back we received the news that, together, the two tests together gave a risk of one in fifty thousand, so that was kind of, you know, fantastic, because then basically there was no need to go for any further tests.
 

We were trying for about four months. And became pregnant. But then I had a lot of problems. I bled for thirty days, so we had tons of scans to check for miscarriage but it had all stopped by the time we went for our 12 week scan and - which was our second wedding anniversary. 

And so they did the non-invasive tests, which at our hospital is nuchal fold, age ratio and a blood test to give you a combined risk for trisomy 21, 13 and 18. And our testing came out a 1 in 32 chance for Down's syndrome - that's what it flagged under. The blood test alone at our hospital said 1 in 6. So they recommend anything under 300, 1 in 300, that you go on for a CVS.

And with Turner's syndrome it usually, the physical symptoms start in the second trimester, because that's when the oestrogen is needed. And if you're missing your second sex chromosome you don't have any oestrogen, and that's when things start going wrong. And swelling and cystic hygromas, fetal hydrops, heart problems, all of those things show up later.  

We feel actually fortunate that our hospital was able to pick up so early, because the nuchal fold came out fine. A lot of times actually with Turner's syndrome it will show a raised level of nuchal fold, but it was our blood test that actually flagged it.
 

The blood test was, the option was a double test for Down's syndrome risk and spina bifida, and it was explained to me that the results would be presented in the shape of a ratio for Down's syndrome and just in a pure sort of high or low, or normal or high outcome for spina bifida. That's what my understanding was.

So they didn't give you a 1 in 389 kind of ratio?

Not for the spina bifida. The ratio, I was expecting a ratio for Down's syndrome, yeah. And I think she explained quite carefully that I would get a letter telling me whether the result, what the outline result was and I could then phone up to find the specific ratio on the Down's syndrome but that it wouldn't be in the letter itself.  

And that if there was any, I remember her saying, “We'll come knocking at your door if there's any cause for concern”. And I found that quite surprising. She meant they would physically come round and contact me in person face to face if there was any very high risk shown. 

Because I found that quite an interesting way of midwives spending their time chasing round trying to find a woman who in my case, you know, might be at the other end of the country with work.

And by that stage I'd, I thought it was past the CVS stage but we were getting into discussions about blood tests and whether I would have blood tests or not. And I said, 'Well, I think I need to talk to somebody about blood tests.' And me and my partner had spoken about blood tests, and we were both unsure about what the position, how to go about it and how we both felt.  

So this midwife, who works very closely with the consultant, took us into a side-room and we talked about the blood tests, and the major thing that came out of it was that my previous history would go down and would be counted. They couldn't do blood tests without using my previous history, which I wasn't happy about. 

And the other thing that came out was that if we had blood tests we were, in fact, making a choice to have amniocentesis because the results would come back high risk, more likely than not, because of my previous history. So we weren't deciding to have blood tests or not, really. We were deciding to have amnio. And as we'd already decided not to have CVS we both felt that we didn't want to have the pain and the stress of going, having amnio. So, really, we've just relied on scans throughout this pregnancy.

Do you feel comfortable with that decision?

Totally, yeah, totally. I think sometimes it's just assumed that you'll have all these blood tests, and you'll have this and you'll have the other, and I don't think there should be any assumption. I think that you should be made aware that it is totally, it is a choice. You don't have to have it. 

There are so many things that you have to do in pregnancy, like blood pressure and urine samples, and you just think the blood test is just another one of those things that you have to do, and it's not necessarily true. I mean, certainly with me, having, just talked through the process of having the screening tests, I didn't realise that it would be, I was making a choice to have amnio, basically. Because I knew it would come back high risk and I didn't want that stress on myself, really or the baby. You know, I just didn't want that stress.