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Pregnancy

Nuchal scan 3.7 St Thomas'

40 replies

Livinglavidafoca · 02/05/2013 17:16

Hello all,

Just wanted to share this:

I had the nuchal scan and the blood test at 12 weeks and it measured 3.7 my age was 26 y/o and the risk was 1:300 which is still low risk for Down S, but was too high for my age. Husband and I were sent to a different room to 'think' about what we wanted to do. The fact that we were sent to a 'quiet room' to think if we wanted an abortion made us feel worse.

We said we did not mind if we had a baby with DS. We cried because they told us even if it wasn't DS it could be something worse, they offered amnio, which we declined because of the miscarriage risk, as I think aborting a DS baby equals eugenics.

They said it could mean a heart condition and only then we agreed to a fetal heart scan.

I did not enjoy my pregnancy because I was worried about my baby's heart. Thank God all is well with my baby, he does not have DS or a heart problem and he is sleeping on my lap atm unaware that I was offered an abortion.

I am crying as I write this, for the record I do not judge people who have terminations, I am all for choice, just it made me feel really bad the whole eugenic focus on DS.

OP posts:
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RJM17 · 02/05/2013 17:32

So glad u had a happy ending to ur story.
I have my tests next week and I'm so scared! Not that there is any history or reason why we would be high risk just think it scares everyone.
Congratulations and sorry you had to go through all that x

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Artichook · 02/05/2013 17:48

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HeffalumpTheFlump · 02/05/2013 18:27

I'm really happy for you that your baby was completely healthy after all, but I don't think this post comes across as very understanding of women who have made the very difficult decision to abort in this situation. I get that its simply your story and opinion but I hope no-one is offended/upset by it.

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TheSecondComing · 02/05/2013 18:30

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narmada · 02/05/2013 18:35

What artichook says.
Are you trying to say that a medical professional sent you into a room to consider abortion because of a 1:300 screen result? This doesn't make any sense to me. They would've presumably asked you whether you wanted to consider CVS or amnio, but not abortion. The cut-off for screening in the NHS is 1: 150 isn't it?

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massagegirl · 02/05/2013 18:41

I had a high nuchal and abortion was not mentioned at all. I chose to have an amnio (miscarriage risk is small) I found every lady on her to be very supportive. I am glad your baby is well but agree with previous posters, your post seems judgemental on those who chose to TFMR or have cvs or amnio.

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missmapp · 02/05/2013 18:45

I had a high nuchal fold with both my boys- with ds2 I was given 1 in 4 chance of downs, we went ahead with pg- he did not have ds but has another genetic disorder and a heart condition. If we were not informed of the risk , this would have made the moments after birth much harder.

When we were told about the nuchal measurement, termination was not discussed, but amnio/cvs offered- this is as it should because everyone needs to decide for their family.

I am glad your baby is ok, but be aware that not all are so lucky.

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MummytobeDC2 · 02/05/2013 18:50

What is it with people always seeing. The worst in people's posts, nit picking for a problem creating a drama?

OP I understand you wrote this for the sake of sharing experience, and what an amazing result. I am so happy for you, I feel this thread is not judgemental but reassuring and giving hope to those people going through the same. Please give this lady respect I'm sure she wasn't coming on to pass speculation on those who decide to abort. Hmm

Congrats OPThanksThanksThanksThanksThanks

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WipsGlitter · 02/05/2013 18:55

I agree they it's a bit odd. Surely you were offered a CVS or amino? The nuchal isn't a diagnostic test.

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narmada · 02/05/2013 19:33

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Helspopje · 02/05/2013 19:48

It doesn't sound like FMU at St Thos at all - the only scenario in which I can imagine that termination may have been mentioned was to consider whether to have definitive screening tests if they would've carried the pregnancy on irrespective.

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Artichook · 02/05/2013 20:48

Having been given a 1:10 risk in a large London hospital I can say termination was never specifically mentioned. All the counselling was about whether to go for an amnio or not. When they learned I wasn't comfortable with an amnio they were v understanding and certainly never mentioned what the next steps would have been had I agreed to the amnio and received a positive diagnosis.

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DinoSnores · 02/05/2013 21:15

I'm a bit confused as well. When we had the 12 week scan with DD1, her NT was 11.4mm so very high risk. We were taken to a little quiet room to give us a chance to think about what we wanted to do, but it wasn't specifically to think about having an abortion. I imagine they were giving you some space to talk about the result together and to decide what to do next.

If, and I think this is the case from your OP, like me, you wouldn't consider a termination for any fetal reason, then they were giving you an opportunity to decide if you wanted to have an amniocentesis and what you would do with those results.

We were offered invasive testing and a termination, both of which we declined, and it was clear that DD1 wasn't going to survive to term, but it was done very carefully and kindly. What most impressed me was that after I said we wouldn't consider a termination unless my life was at risk, they never mentioned it again and never made me feel pressured to make that decision even when we knew things were going to end sadly.

I'm very against terminations personally, but they are legally available in this country and therefore it was a reasonable medical option that they had to make us aware that was available.

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rowtunda · 02/05/2013 23:58

I had a 1:86 risk at St Thomas's and I was offered a CVS which I declined and instead I had multiple scan throughout pregnancy. At no point was abortion discussed - all the follow up scan were very reassuring and I had a gorgeous healthy DS.

The nuchal and bloods are screening test and not diagnostic and no doctor would or should be discussing abortion based on the screening test alone as they have false positives.

Maybe OP didn't understand the situation fully but I think the thread is a little bit scaremongery and frightening to people about to have their 12 week scan.

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rowtunda · 03/05/2013 00:01

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katiecubs · 03/05/2013 06:53

I have had a very high risk result at ST Thomas' - they were brilliant and I think suggesting they implied considering abortion, without further testing, for a 1/300 result is somewhat ludicrous.

I am glad your baby is ok but your post is quite heartless and very unfair to people going through similar situations.

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Livinglavidafoca · 03/05/2013 10:11

Mummytobe Thank you, it seems you are the only one who understood my post, it was actually also my husband's idea to write our story because when we got the 3.7 result we were also scared and we used this site for reassurance.

However, I have decided to ask for this thread to be removed for the reasons you mentioned, I got fed up with all the BS in the comments.

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rowtunda · 03/05/2013 10:57

I don't think you can just ask for a thread to be deleted because you don't like the responses.

We are not giving you BS we are just pointing out your obvious misunderstanding of the difference between a screening test and a diagnostic test. We are also highlight your judgemental and unhelpful views that equate a diagnostic test such as CVS or amino with a miscarriage rate of 1;50 to 1;500 (depending on doctor) with that of an abortion!

We are also trying to reassure women who are just about to have the combined test or who have just had an increased risk and are trying to make a really hard and difficult decision about our experience at St Thomas's Fetal Medicine Unit.

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narmada · 03/05/2013 11:09

I think people are cross because your post seems to claim that staff at St Thomas's FMU might have acted unprofessionally or in a morally reprehensible way by "offering you an abortion" on the grounds of a bad nuchal measurement. I find it impossible to believe that this is what actually happened. Truth and accuracy in factual accounts is really important when discussing such emotive and morally charged issues as abortion or termination for medical reasons.

I am sorry you feel this is 'BS' but you must also see that what you wrote could be seen as unwarranted criticism of St Thomas's FMU staff?

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Pizdets · 03/05/2013 11:21

I also think it's very easy to be upset at being put through a stressful situation 'unnecessarily' when it turns out thing are fine, and I understand that you meant to reassure others who might be going through the same thing.

However the hospital staff have a duty of care to everyone they treat to tell them the truth about the risks and allow them to make an informed decision. It's not down to the hospital staff to make you feel better about things, all they can do is share the information they have available to allow you to decide whether you want to pursue further testing or not.

I'm pleased for you that your baby turned out to be fully healthy, as the hospital told you he probably would, and I hope other women reading this can feel reassured that if the odds are in your favour then things probably will be absolutely fine.

But if you're worried and need to test, I'd also like to reassure people that the team at your local hospital would never put you under pressure to terminate and certainly would not even raise it as an option without a firm diagnosis and your full agreement.

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Livinglavidafoca · 03/05/2013 11:55

It's amazing how many people seem to know what happened there without being present. And I am obviously wrong because my experience wasn't the same as their experience.

rowtunda thank you so much for pointing out I do not understand the difference between an screening test and a diagnostic test. I am just a stupid and thick woman. Do you feel better now?

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ghislaine · 03/05/2013 12:05

I think you must have been so taken aback by the high nuchal result that you didn't really understand what was going on, and I mean that in the kindest possible way, having been there myself.

If you think you really were asked to consider a termination solely on the basis of a high nuchal fold measurement, then you should probably complain to PALS or the COO of the Trust or the GMC. The nuchal fold is only one soft marker for Down's syndrome and is not a definitive diagnosis. No medical professional worthy of the name would advise you to have a termination based on one soft marker (which could itself have been indicative of other chromosomal abnormalities or heart problems, as they told you). It seems much more likely to me that you were asked to consider what (if any) sort of follow-up testing you would have. I say this because you were offered further cardiac scans and amnio. Why would they offer you those if they thought you should proceed immediately to a termination?

I would also like to correct, for other posters who may be reading this, your misconception that an amnio is the same as a termination. It absolutely is not, and to suggest otherwise is very misleading.

I also can't really fathom your distress at being given privacy to think about this - would you rather have been sent to the hospital cafe?

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narmada · 03/05/2013 12:20

so livinglavidafoca, what DID happen???! Did they send you to a side room specifically to consider abortion or not?!? Because if they did you should complain.

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rowtunda · 03/05/2013 13:11

hmmm . . . yes because that is exactly what I said Hmm

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TrixieLox · 03/05/2013 14:20

How wonderful that you're baby's doing so well :-)

But wow, you need to make a complaint about your treatment! It's HIGHLY unusual to be 'sent to a quiet room to think if we wanted an abortion'. How horrible for you (horrible and exceptionally rare). And to be 'offered an abortion' as you say? You were actually verbally offered an abortion at such an early stage? I've never ever heard of this?

If those words actually came out of someone's mouth then definitely make a complaint!

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