A-Z

Ending a pregnancy for fetal abnormality

Early scans and blood tests

All women will be offered a dating scan, and an 18- 20 week fetal anomaly ultrasound scan, in line with NICE and UK National Screening Committee recommendations.

Women also have routine blood tests (or 'blood screening') to find out the mother's blood group and several other things. (For more detailed information about women's experiences of antenatal screening see our 'Antenatal Screening' website). For more information on screening tests please see 'Resources'. 

Though all the pregnancies considered here began in the usual way with early scans and blood test screening, they all differed subsequently because the baby was found to have problems. (See also 'Having the 18-20 week scan and further tests'.)

 

Explains what she understood different scans were for.

Text only
Read below

Explains what she understood different scans were for.

Age at interview: 34
Sex: Female
HIDE TEXT
PRINT TRANSCRIPT

The first scan was to check the make-up of the baby - check that there was a heartbeat, check that their arms, legs, head and measure the length of the baby from crown to rump really. So that was what the first scan was for - a basic sort of check really - and I was told that they're limited in what actually, if there is any abnormalities with the baby at that stage, they're very limited about what they can actually find, it's not really till the 20-week scan where they'll pick up most things, especially congenital deficiencies.  

The nuchal scan, we were given a leaflet, sent a leaflet by the hospital before we attended. My husband and I both attended the scan. We were very well informed about what to expect. We knew before going in for the scan, that if there was a problem we would be told there and then, and we would then be advised to take further tests, such as amniocentesis. So we were very well informed about what to expect and how the scan would take place.

The dating scan
Many people couldn't remember much about early scans, particularly if they had experienced other scans later on in pregnancy. People we interviewed expressed a range of views about the purpose of the 12-week scan. Some thought it was to verify the pregnancy, work out likely dates for the baby's birth and give parents a chance to see the baby. Others thought the scan was done to check that the baby was alive and that s/he had all the major organs and limbs.  This scan is part of the screening test for Down’s syndrome known as the combined screening test it is most effective if done before 14 weeks (it is normally done as part of the dating scan 11- 14 weeks of pregnancy), women need to know about this option early enough and not delay the dating scan past 14 weeks if they want one (for more details see the section below on nuchal translucency scan).

Some people experiencing their first pregnancy didn't realise when they were asked to 'come back in a few days' or told that someone else needed to look at the scan, that their baby had a problem. One man had been confused by what he was told at the first scan which seemed to cast doubt on the pregnancy. 

 

He felt happy at seeing his baby for the first time on the screen and took scan pictures to...

He felt happy at seeing his baby for the first time on the screen and took scan pictures to...

Age at interview: 32
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
Well, I first saw the baby on the screen at the 13-week scan. And as soon as I saw it, because of what they'd just told us, I didn't know what to expect on the screen. I didn't know if it was going to be nothing, or was there going to be something that died. But as soon as I saw it, and I saw it moving, I was just, this wave of relief and joy came over me really. I thought, 'Wow look, that's our baby, and it's moving, it's fantastic'. I couldn't believe it, I was just smiling and grinning the whole time [laughs].

I had to keep my emotions a bit in check because [wife] was still a bit upset about what they'd told her. So she, I think she was a bit disappointed because she wasn't as happy as she felt she really could have been, which was a bit of a shame. But I felt it had become much more real at that point, I felt quite happy seeing it was real. I told people afterwards you know, we'd had the scan photo and I was showing that to people at work and various other friends. So it was great, it was great to see it on screen for the first time.

Some people who had been told that the baby looked 'structurally sound' at the first scan, said they felt relieved that the pregnancy had moved onto 'safe ground', and decided to break the news to family and friends.

 

Her baby looked structurally fine on the 12-week scan and she and her partner decided to tell everyone about the pregnancy (a blood test shortly afterwards detected signs of spina bifida).

Her baby looked structurally fine on the 12-week scan and she and her partner decided to tell everyone about the pregnancy (a blood test shortly afterwards detected signs of spina bifida).

Age at interview: 39
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
It was quite quick actually, the whole scan procedure, because I mean I suppose that's just the measuring scan, so they don't really, and at that stage especially with the sort of less powerful scans, if you know what I mean, rather than the sort of abnormality-type scans, there isn't an awful lot that they can see apart from the actual measures and the nuchal fold. So the main structure of the baby seemed to be, you know, fine.  

And, you know, it was, the whole thing was quite jokey and I remember, you know, the guy saying, 'Well, you know, at least we know you haven't got twins and there's only one in there'. And, you know, the guy was, just quite nice, it sort of was all very light-hearted and, you know, it was all fine. We were relieved, and we went out and we went for a coffee with my partner, and that was that.  

And that, at that point we decided to tell our families only after the third month, and, even though I'd told my mother already because she doesn't live in this country. So I went to visit my parents and I felt that it was better for me to tell them face to face rather than over the phone. So, you know, that, that was maybe two and a half months, but everybody else we decided to tell later on. 
 

Most people were amazed and overawed by the sight of their baby on a screen, and said they treasured the photographs and videos from the scan. For people who ended up having a surgical termination, scan photographs of the baby were often the only memento they had of the baby.  

 

She and her partner paid to have extra photographs of the baby's 12-week scan.

She and her partner paid to have extra photographs of the baby's 12-week scan.

Age at interview: 25
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
Can you describe that first scan?

Oh, it was... I don't know it was like a kind of fairy tale. All of a sudden there's, it's, you know people are showing you this little blip that's actually inside you, and you're looking at it and you're like, I can't believe that's actually in me. And, you know, I know all about how the, the technology works but you still, you still can't believe it's actually inside you. 

And we were just kind of, and they gave us the pictures, and we ended up - we got a whole ream of them, just hundreds of them - 'cos you have to pay for each one of them as well - so we just like, oh we got to have loads. And I think we just walked out of there like we were on cloud nine. It was amazing, you know and they said everything was great, everything looked wonderful you know, good size, good position, all those kinds of things. 
 

Her mother has all the scan photos of her grandchildren up on her bedroom wall and her other...

Her mother has all the scan photos of her grandchildren up on her bedroom wall and her other...

Age at interview: 34
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
When you go it's mainly sort of like, your first scan, when you go for your scan, they ask you if you want a picture now. It just looked like something that's been done so that's all I've ever known. So I had a picture and I'm very close to my Mum, very close. Without my Mum I don't think I would be here today. So we got one for my Mum [laughs] and one for [husband's] Mum because she lives in [place] and it was just like, it was such a big event because it was like the first grandchild, everything like that.  

So it just seemed to be, to carry on - the second child you do the same. You get one at 12 weeks and one at 22 weeks. So it was just sort of like a run of the mill thing that we did. We've got pictures of, at the scans. She's got all of them, all of the scan pictures up in her bedroom. They've all got a special frame and it's just like, you say to the little ones like when you go over there 'That's you and that's you' [laughs]. And they are like wow... 

So I think it's nice. They can look back and see the technology that we've had and when they get older the technology is going to be so different. They'll probably have proper pictures and videos or something [laughs]. 

Several men said that seeing the baby on the scan helped them get to know the baby - one man said the scan gave him 'something to focus on rather than just a big bulge'. Not everyone felt that they bonded with the baby during the scan - one woman said she couldn't relate the fuzzy images she saw on the scanner to her baby.  

Sometimes 12-week scans were not reassuring, particularly when sonographers discovered that the baby looked small and that the dates might be wrong. Some women felt instinctively that something was wrong with the pregnancy - some had experienced bleeding - and so did not always believe sonographers when they said that the baby was alright. (See also 'Feelings about the pregnancy').  

 

She felt anxious and uncomfortable during her first scans.

She felt anxious and uncomfortable during her first scans.

Age at interview: 39
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
It definitely wasn't with hindsight it was, that is, that was happening at the time. Each of the two scans prior to the nuchal scan I felt uncomfortable. I felt that every time the dates were questioned my stomach was lurching and I felt anxious. I had an anxiety that something was wrong. And I can't really explain it beyond that. It's almost like something instinctive. And it, you know on reflection, you kind of attribute that to a warning that this pregnancy is not going to progress. At the time I just felt I couldn't, I couldn't relax in the pregnancy, and at the nuchal scan it was the same and it was probably stronger because now weeks had gone on, and what the professional was seeing on the screen wasn't what I was feeling inside. 
 

Nuchal translucency scan
All pregnant women in England are now offered tests for Down’s syndrome. The tests can provide information about the chance of a baby having Down’s syndrome. These tests use blood samples taken from the mother, measurements taken from ultrasound scans (nuchal translucency scan/dating scan) or both to work out this chance. The NHS Fetal Anomaly Screening Programme now recommends that women have the combined screening for Down’s syndrome (blood test and nuchal translucency scan) rather than just the blood test or the nuchal translucency scan. The vast majority of units in England, Scotland and soon Wales now offer combined screening for Down’s syndrome.

Nuchal ultrasound scans are performed at 10-13 weeks of pregnancy. They measure a small fluid collection within the skin at the back of the baby's neck (nuchal translucency) to help identify the risk of Down's syndrome and other chromosomal abnormalities. The results can be combined with a blood test result (combined screening)  to give a more accurate calculation but these tests cannot give a definite diagnosis. If the risk is more than 1 in 150, further tests will be offered. The nuchal translucency scan can also indicate cardiac or other problems, if the measurement of the fluid is the same or greater than 3.5mm, the mother will be advised and further tests may be offered along with a referral to a fetal medicine specialist. She will be given this information even if she has chosen not to have Down’s syndrome screening.

The nuchal scan has only fairly recently been offered routinely on the NHS and several people we talked to had chosen to pay for the scan to be done privately because they wanted to know whether the baby was at risk of Down's syndrome and because they didn't want to go for an amnio or CVS unless absolutely necessary (see 'Information' section - Diagnostic tests ).

A woman who had private fertility treatment said that when health professionals detected signs of abnormality in the baby during a nuchal scan, she was told that she needed to have more detailed scans in her local NHS hospital. One woman was offered a nuchal scan on the NHS and took her sister and twin babies with her - a decision she looked back on as 'naïve'.  

 

The nuchal fold test showed that both her twin babies could have Down's syndrome.

The nuchal fold test showed that both her twin babies could have Down's syndrome.

Age at interview: 43
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
About 14 weeks I had a call from our local hospital that said, 'We're offering routine scanning to women to do the nuchal translucency test,' which is where they measure the skin fold at the back of the neck, and, 'Would you like to come in?' And I said, 'Oh, yes, I would'. And at that time I was very excited, any opportunity to see the babies again was wonderful. And I went in with my sister, because I think my husband was working, and I also had my twins with me as well in their buggy, and we wheeled into this scanning room, which was very small. And my sister had never seen a scan before so she was quite excited as well.  

And when they put the probe on my tummy they had a good look and they actually said they thought there was a problem with both the babies. They had measured the skin fold at the back of the neck, and said that it indicated that they both had Down's syndrome. And that was just horrendous, absolutely horrendous.

Non Invasive Prenatal Test (NIPT) is another screening test that can be used to detect Down's syndrome. It is a non-invasive test using a maternal blood sample to test free-cell fetal DNA. During pregnancy, fragments of DNA from the placenta called free-cell fetal DNA circulate in the mother’s blood steam. These DNA fragments (CFFDNA) can be genetically tested along with the mother’s blood to show if there is an increase in the number of abnormal chromosomes. This screening test is not currently offered by the NHS, however some NHS Trusts have piloted the test and a number of maternity units do offer testing privately. The sample has to be sent outside the UK for analysis so the results take about two weeks to come back. The cost of the test varies between clinics (£350 to £550). Large scale studies show that the test has a detection rate of over 99% (ARC July 2017) and also tests for some other common chromosomal anomalies; Edwards syndrome (trisomy 18), Patau syndrome (trisomy 13) and Turner syndrome. It can be performed from 10 weeks of pregnancy and unlike amniocentesis and CVS has no risk of miscarriage. However if the NIPT gives a positive result, an amniocentesis is required for confirmation. For more information see RAPID (Reliable Accurate Prenatal non-Invasive Diagnosis) website www.rapid.nhs.uk or ARC (Antenatal Results and Choices) website. None of the people we interviewed had had this test. 

Women who already experienced difficulties getting pregnant or carrying pregnancies to term, said that they found that every scan made them feel nervous. We also talked to women who had gone through two or more terminations because of they were carriers of a recessive gene, and they and their partners also felt extremely anxious about early scans in subsequent pregnancies.  

 

Having ended two pregnancies because the babies had neural tube defects she is pregnant again but...

Having ended two pregnancies because the babies had neural tube defects she is pregnant again but...

Age at interview: 36
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
I mean all I can say is that in this pregnancy I have been very, very anxious especially in the first few months. And just going for the scans I think I've been scared - I think this is the worst I've been I think - I was literally trembling when I went inside. Every scan I've been so I can't talk, I can't move, I can't, you know, I'm just in shock. Until he says everything's all right I'm like a mess, a right mess. And I don't know if that's normal I suppose.  

I hate going for scans, I think they're you know. I know I've put myself through this as a choice, I knew it was going to be like this. But then you never really realise what it's going to be like until you go through it again.

 

She dreads scans because of her previous experiences.

She dreads scans because of her previous experiences.

Age at interview: 43
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
No well I've already experienced a scan where the baby was dead you know sort of, so I already have an extremely negative approach to scans. I was very fearful at every single scan of my live daughter, but I, at the same time I felt, still emotionally I felt like that was going to be a successful pregnancy for some reason. So I still have an element of optimism [laughs], but I would still approach a scan in a very fearful way.  

So I can talk about it quite 'blah' - I can say 'yeah it was a viability scan', and 'oh there's a heart beat, that's marvellous' - you know it wasn't 'well of course there'll be a heartbeat at all', it was the other way round, so to me that was positive. 
The Royal College of Obstetricians and Gynaecologists (RCOG) have produced a report on ‘Termination of Pregnancy for Fetal Abnormality in England, Scotland and Wales’ (2010).Within it are a number of recommendations for the communication of findings from ultrasounds. The following is a quote from their report:
 
“If the scan reveals either a suspected or confirmed abnormality, the woman should be informed by the sonographer at the time of the scan. It is essential that all practitioners performing fetal anomaly ultrasound screening should be trained to communicate abnormal findings to women, as such information is likely to have significant emotional impact.

Usually, sonographers will ask a senior sonographer colleague to confirm findings and this should be done immediately. If an abnormality is confirmed or suspected, referral is usually required, although some obvious major fetal abnormalities, such as anencephaly, may not require a second opinion (this should be decided by local guidelines).
 
For women who have been given distressing news about their baby during the scan, there should be a health professional available to provide immediate support. In the case of a suspected abnormality, women should be seen for a second opinion by an expert in fetal ultrasound, such as a fetal medicine specialist. An appointment should be arranged as soon as possible and ideally within three working days. Any delay in receiving more information about the abnormality and its implications will be distressing for women and this should be acknowledged.

Last reviewed July 2017.
Last updated July 2017.

 
donate
Previous Page
Next Page