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Nuchal scan 3.7 St Thomas'

(41 Posts)
Livinglavidafoca Thu 02-May-13 17:16:11

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.

RJM17 Thu 02-May-13 17:32:24

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

Artichook Thu 02-May-13 17:48:43

To be fair nobody aborts on the basis of a high risk nuchal, your next step would have been an amnio or CVS which would have given you a definite diagnosis and then you would have made your decision. You would not have ended up aborting a chromosomally normal feotus.

You say you don't judge those that abort due to Down Syndrome but your tone and use of the word eugenics suggests otherwise. I'm not sure what the point of your post is other than to express judgement

HeffalumpTheFlump Thu 02-May-13 18:27:38

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.

TheSecondComing Thu 02-May-13 18:30:42

Message withdrawn at poster's request.

narmada Thu 02-May-13 18:35:19

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?

massagegirl Thu 02-May-13 18:41:10

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.

missmapp Thu 02-May-13 18:45:31

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.

MummytobeDC2 Thu 02-May-13 18:50:47

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

WipsGlitter Thu 02-May-13 18:55:31

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

narmada Thu 02-May-13 19:33:47

Message deleted by Mumsnet for breaking our Talk Guidelines. Replies may also be deleted.

Helspopje Thu 02-May-13 19:48:04

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.

Artichook Thu 02-May-13 20:48:56

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.

DinoSnores Thu 02-May-13 21:15:33

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.

rowtunda Thu 02-May-13 23:58:28

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.

rowtunda Fri 03-May-13 00:01:19

Message deleted by Mumsnet for breaking our Talk Guidelines. Replies may also be deleted.

katiecubs Fri 03-May-13 06:53:23

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.

Livinglavidafoca Fri 03-May-13 10:11:16

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.

rowtunda Fri 03-May-13 10:57:44

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.

narmada Fri 03-May-13 11:09:14

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?

Pizdets Fri 03-May-13 11:21:11

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.

Livinglavidafoca Fri 03-May-13 11:55:15

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?

ghislaine Fri 03-May-13 12:05:43

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?

narmada Fri 03-May-13 12:20:02

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.

rowtunda Fri 03-May-13 13:11:21

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

TrixieLox Fri 03-May-13 14:20:05

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!

lozster Fri 03-May-13 21:13:16

I second some of the previous posters in saying you need to complain. Firstly, as far as I am aware, most odds are calculated on a combined score not just the nuchal. Second you should have been offered a diagnostic test or further detailed scan. A termination is not the next step from a nuchal test.

For anyone in this position at the moment, I would advise posting on the ante-natal board for advice and support. It was a life line for me when I got a 1:4 combined result.

Artichook Fri 03-May-13 21:55:12

Why on earth was my post deleted MN? In what way did it break guidelines?

narmada Fri 03-May-13 22:07:45

Mine too. My first deletion.... but why shock?

Artichook Fri 03-May-13 22:12:48

I am at a loss to think why my post was deleted. As I'm in the last weeks of a high risk pregnancy I may be being over sensitive but I'm pretty upset that my reasonable comments about a potentially upsetting and misleading OP were deleted.

sleepyhead Fri 03-May-13 22:17:20

Yes, you should complain about the unprofessional person who offered you an abortion because of a risk of DS of 1:300. That's truly shocking.

I'm surprised they even offered you a diagnostic test at that risk level tbh. You would have been strongly counselled to reconsider this if you'd requested it with this risk factor in my Health Board (given that the risk of miscarriage would have been much higher than the risk of a chromosomal abnormality).

My experience of having a 1:27 risk factor was that termination was never mentioned, and we were counselled to think carefully about any further testing and in no way pushed to go down that avenue.

I'm sorry your experience was so poor, but great news that your dd was healthy (although with a 1:300 risk it was always by far the most likely outcome).

narmada Fri 03-May-13 22:19:24

Me too. The only thing I can think of is it was construed as a personal attack.... but really?!? It really wasn't.

And the OP hasn't redponded to my q about whether it was actually suggested she had an abortion on the strength of nuchal results, I notice. Hmmmm.......

GoldenBeagle Fri 03-May-13 22:46:31

I have had that same shock at a scan, and the same pregnancy long worry. I am sorry you had all that to contend with. It ate me up.

They took us into a quiet room so that we could think what we could do - and during the extremely helpful discussion they gave us a way to think about the small risk of a m/c as set against what we would do if we found we had a child with a trisomy. It certainly was not to 'think if we wanted an abortion' but the implication was that we should think carefully about having amnio if the results would make no difference to our decision anyway. Which is absolutely not the same as offering an abortion.

OP, while I am sure everyone is very happy to hear that like the vast majority of people who go into that quiet room, you have a baby who does not have any issues, I think people are reacting in disbelief that you were 'offered an abortion' on the basis of your screening test. IF that is the case and they said 'you have this risk, would you like an abortion?' then you must complain through the official channels.

If however, they implied that IF a diagnostic test showed complications and you would possibly include a termination in the possibilities to consider then that might suggest that amnio would be a choice for you, then unfortunately your post comes across as a bit sensationalist in the vein of 'abortions offered unecessarily'.

I am sure you didn't mean it to come across like that.

Our scan showed 2 soft markers, and we did opt for amnio because of the severity of some of the trisomies mentioned, and I was distraught, unable to handle what I saw as the betrayal of my baby having even considered a termination as a one of a range of possibilities. And I am not anti-termination, I have had an abortion in the past over which I have no regrets. My baby did have some problems, but these have been sorted out through surgery.

Had one of the severe trisomies been diagnosed we may have opted for termination, and my grief would have been immense.

I am so pleased your story has a happy ending.

rowtunda Sat 04-May-13 09:31:13

My post has been deleted as well - I can't for the life of me think why . . . . Maybe it was because I stated that I thought the OP was extremely judgemental in her insinuation that amino or CVS equates to an abortion.

I stand behind my comment and will keep on repeating it on this thread if I get deleted again.

I went through a high risk pregnancy and had to make a decision about CVS/amino and found it very difficult and I think inaccurate and judgmental OP's like above need to be highlighted to others going through the same.

I chose not to have a CVS or amino as I was concerned about miscarriage risk and my 1:86 risk was for Edwards syndrome which wasn't compatible with life. It was a extremely hard decision but if it had been an increased risk for downs or a syndrome that was compatible with life I would definitely have had further diagnostic screening. (I had a gorgeous healthy boy in the end after multiple scans)

YoniMeKateMumsnet (MNHQ) Sat 04-May-13 10:04:38

Morning all,

Apologies all, we should have posted on this thread yesterday to say we we're deleting posts that were personal attacks.

narmada Sat 04-May-13 11:13:44

MNHQ, I am really surprised you construed the posts as personal attacks.

CuteLittleToes Sat 04-May-13 13:27:04

I'm really glad your baby is doing well

However, personally I found comparison of terminating a pregnancy with DS with eugenics mildly speaking, offensive. You don't do that and then claim you don't judge people who decide to terminate. The word itself is a judgement already.

Artichook Sat 04-May-13 20:32:25

Thank you for reinstating my post MNHQ. I really did not mean it as a personal attack and I think it is important that people with high risk pregnancies, who see this thread, realise that the OP's views about eugenics are not in the majority.

FOURBOYSUNDER6 Sat 04-May-13 20:55:47

Oh op ! You have been through such an emotional pre natal ordeal ! In your post natal phase now I imagine you must still be feeling in shock about the whole experience and it is understandable !!! You have experienced a huge trauma and it will take time to accept what has happened. Have you family and friends who you can talk to for emotional support ? Maybe counselling of some sort might help as you do not want this trauma to lead to Pnd ??? IMO I don't think your post is insensitive as some find .... You have a happy ending which is lovely but you have been through emotional turmoil and are bound to still be upset by everything !!!!! What should have been a joyful and healthy pregnancy was clouded by fear ..... It happened to a friend of mine last year. She did not terminate either and baby was fine. She was off work with the stress and shock of it all ..... I think it happens more than people realise ...... Congratulations on the arrival of your baby. I hope in time the trauma you have been through no longer over shadows your post natal phase now and that you enjoy your baby without feeling too upset about the could have beens .....smile

FOURBOYSUNDER6 Sat 04-May-13 21:04:29

Ps also wanted to add that you sound a very courageous person to have continued with your pregnancy under all of this pressure and I am sure this courage will in time also give you the inner strength you need to recover from the whole experience ......stay strong.

FOURBOYSUNDER6 Sat 04-May-13 21:11:44

Re read mummy2bdc2 post again as it is a lovely, supportive one and ignore the unhelpful comments posted that may just cause further upset when you have been through enough... X

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