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Pregnancy

Talk about every stage of pregnancy, from early symptoms to preparing for birth.

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Original poster

nuchal result - worried

39 replies

madgirl · 02/01/2004 19:44

i should be over the moon i know, had my nuchal scan today- am 13 weeks - everything looked great for the baby, but my DS risk was 1:684. I am 36, so i know my risk is higher but that seems so much higher than 1:1800 which is what DS is. the nuchal fold measured 2mm. Can anyone give me some feedback on whether I should seriously consider an amnio? thanks everyone.

OP posts:

Are your children’s vaccines up to date?

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nearlymybeetrootday · 02/01/2004 19:47

This reply has been deleted

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NewThinnerDragon · 02/01/2004 19:49

I can't really offer any advice but remember that the miscarriage risk of an amnio is 1:100 which is worse than your nuchal result. A lot depends on what you would do in the event of a confirmed DS diagnosis.

NewThinnerDragon · 02/01/2004 19:50

and even with the 1:1800 result you could have been that 1 person.

emmatmg · 02/01/2004 20:15

I had a 1:16 result with DS2, had a CVS test thingy and all was fine.

When PG with DS3 I had similar results/measurements to you and all was fine again.

IIRC the nuchal fold has to be over 4mm for them to recommend futher tests.......I could be wrong though.

princessinapeartree · 02/01/2004 20:16

1:684 is a good result for 36! I remember being shocked with the change in probabilities through age alone from my nuchal scan #1 at age 28, #2 at 31 and #3 at 34... think it is basically impossible to get 1:1800 at 36 I'm afraid. They also look at other indicators which don't feed into that probability like the presence of a defined nasal bone - and if they were happy with the scan they probably saw those as well. I know my sonographer was delighted that ds2 looked like barry manilow (us less so I must say)...

pie · 02/01/2004 20:20

FWIW most hospitals consider 1:300 (my second nuchal was this) a high risk result and then suggest an amnio, so I wouldn't worry unless there are other genetic factors you would like to get checked out. Agree with Dragon's comment to. Also exactly how many weeks/days are you, as it can't be done past a certain time accurately. I think its 13+5 but I'm sure someone else knows.

emmatmg · 02/01/2004 20:45

Yes pie I think you are correct. I'm positive they told they couldn't do a nuchal measurement after 13 weeks (or before 11 weeks)

Cavy · 02/01/2004 20:58

I phoned the Harris Birthright trust in London and they told me (they should know, they invented the test!) that 13wks+6days was the absolute last day for Nuchal Translucency to be valid.

I'm 36 and I got a risk of 1:505, I think... so I think what you got is very good, too, madgirl.

Original poster

madgirl · 02/01/2004 21:27

I am 13 weeks exactly. thank you for your support everyone. ds has said that if i would like an amnio he will support me in that (and it would make a huge difference to me if he didn't agree) but i think i will let it all sink in over the w/end and hopefully will "know" what i'm going to/not going to do in a few days' time. i'm a great believer in my knowing deep down inside what i want to do. god, though, i wish i wasn't such a glass-half-empty person all the time.

OP posts:

udar · 05/01/2004 15:21

I didn't have a nuchal but had the serum blood tests at 15wks and at 29 brought my ratio to 1:275. We opted for an amnio and all went well but it is a really horrible decision to have to make. Look at the difference in just age related risk to the risk that you would have had without the test. I've got a feeling that the ratio you have been given by the Nuchal scan is actually better than that of the normal 36 year old by 'fate'. Good luck with your decisions.

Helsbels · 05/01/2004 15:26

I am 35 and had nuchal the result was 1 in 1894. The fold measured 0.9mm. The woman doing the test said that the result was excellent for my age (without scan 1:228 at 35) so I think you have nothing to worry about. The chances are minute - however, you need to be happy or you could cause problems by worrying. Hope you can make a decision quickly and harmoniously, good luck

lazyeye · 05/01/2004 15:28

I was told at the RVI in Newcastle that anything under 3mm ( I was about 13 weeks as well) was fine. They would take no further action if 3mm or under so I would say you were fine. What did they recommend you do?

Original poster

madgirl · 05/01/2004 15:33

lazyeye they were extremely cold and non-committal- which i think is why i feel so confused and low about it. helsbels i agree- your result is fantastic, and if i had had sth similar i wouldn't be doubting it, but mine is 3 times higher risk that yours.......
guys, i really appreciate you coming back with your experiences, it helps so much "talking" it through.

OP posts:

ThomCat · 05/01/2004 15:35

Madgirl - sorry you're worried, but I'm sure there's no need.

With regard to having an amnio, unless you know that you would terminate if it was discovered that your child may have DS then is there any point?

If you want to talk off or on the boards about Down's then I'm here for you. Not sure if you know but my little girl has DS so I may be able to help with any conerns you might have. Feel free to email me if you want.

I hope you're okay and I wish you a healthy, happy pregnancy, birth and child.

Thomcat xx

LIZS · 05/01/2004 15:41

Did they give you the background risk , based purely on your age, as this should put your result into context. For example, with dd, at almost 34, the background risk was 1:314 so I would say that your result is pretty low risk comparatively, given that the background risk would have increased over the additional 2 years. Regardless of the figures there is always that chance of being the 1.

Only you can decide whether your doubts outweigh the risks of the procedure but if you are seriously considering it you should talk to your midwife in the first instance. I believe that there are other indicators of DS which they can scan for in a few weeks time if you need reassurance.

musica · 05/01/2004 15:53

madgirl, I think that seems pretty good. It is worth remembering what the statistic means - in a room of 684 people, one would be DS (effectively). So it probably won't be you. On the other hand, in a room of 1800 people, one will be DS and that could be you, though probably not. It happened to a friend of mine - she was 1 in 1800, and when her baby was born it was DS. So it is only a probability.

I would only consider an amnio if you would take any action if it was DS. If you would continue with the pregnancy anyway, then I wouldn't put a probably 'normal' foetus at risk, but if you would definitely have a termination, then it might be worth considering, though it seems quite low risk that your baby is DS.

Incidentally, my friend who had the DS boy is really glad she didn't know, and he is the sweetest child you could imagine!

ThomCat · 05/01/2004 16:07

I was put in low risk and my out of this world amazing, beautiful, hysterically funny, charming, loving, giving, daughter has DS. This may be very biast - but ask anyone and they would agree!

Twinkie · 05/01/2004 16:18

Message withdrawn

uplate · 05/01/2004 16:49

Madgirl,

my risk was 1 in 100 at 38, and the measurement was 1.8mm, I also worried about if to have an amnio, but decided against it. My DD is now 18 months old and has no problems at all!

I am planning another PG at 40 - my risk will be even higher, but I still won't have an amnio.

ThomCat · 05/01/2004 17:38

Good for you uplate - that makes me so happy.

Perhaps this isn't the place to say it, but I mean no harm and am trying to be of some small comfort if you are worried - people really shouldn't worry about Down's syndrome. I fail to see the problem with having a child with DS and I have spoken to many other mothers in my situation who would all agree. There's absolutely nothing wrong with people with DS - they are just slowed down versions of everyone else - and what's wrong with that. Anyway there are no guarantees in life and if you could pick out all the things that could occur later on in life at your scan - well - the population would drop drastically and we'd have a very dull world!!!

If you don't agree then that is absolutely fine, I'm just trying to make you feel better and being honest.

My daughter is the most wonderful individual and as people on here are probably bored of hearing me say I love, love, love being her mum and treasure every day with her. She's made my world a wonderful place to be and I mean that sincerely. I have no real worries about her at all - no more than every other mother in the world anyway!!

Like I said Madgirl - I'm here for you if you want to discuss anything, but quite honestly I'd try and enjoy your pregnancy and look forward to the child you'll soon have.

Good luck and lots of love - Thomcat xx

hana · 05/01/2004 18:00

what a lovely post thomcat, lottie is lucky that you are her mum.

hana · 05/01/2004 18:54

madgirl, meant to also add that that is such a low risk, and I wouldn't risk having an amnio which carries a 1 - 2% chance of miscarriage - greater, much greater than your risk of a DS baby. Good luck in coming to a decision.

eidsvold · 05/01/2004 19:55

I too have a dd with down's syndrome and feel the same way as Thomcat. I knew prior to her birth that she would probably had Down's syndrome due to the type of heart defect that she had - very very common in children with down's syndrome - who also have a heart defect.

THe fetal cardiologist who did the cardiac scan at 22 weeks pregnant - offered me an amnio which I refused.... given that it would not change the outcome. There was no way we were going to terminate and when I said that to the cardiologist he actually supported me and said that there was no point in having an amnio then.
( I had this fetal cariac scan at Kings - so in the right place for it - had I wanted an amnio.)

They did give me a very detailed anomaly scan - kind of like a 20 week scan and physically my dd had one soft marker out of a number that they checked ( her head circumference was a little on the small side - the rest of the physical markers were 'normal)

Having said all of that - I have learnt so much from my dd who is now a healthy amazing 17 month old ( survived two open heart surgeries and various complications) and I could not imagine my life without her - neither could dh and our family and friends.

Sure there have been tough times and I would not pretend otherwise but so far the rewards have far outweighed the tought times.

However - no one can make the decision for you - it is up to you and your dh/dp.

Original poster

madgirl · 06/01/2004 15:36

Thank you all for your truly invaluable advice and insight. I have pretty much decided not to have the amnio, to be honest I am too excited and too pleased about my baby to think that I might even terminate in the event of finding out that the baby has ds. As for ?preparing? myself, I think this has also been a kick up the bum for me to find out more about ds and other conditions as it was the ?fear? of having a ds baby that was making me so scared, and that fear I think is fuelled by ignorance on my part. Thomcat, I would like to ?talk? with you about that if the offer is still open. I am still scared by the ?number? ? the statistic thing but as Twinkie said so succinctly, it?s the maths confusing the issue I think ? it won?t ever add up for me and is just masking deeper issues. And I hope I have not offended anyone in my post by insinuating that a ds baby is less than perfect because having one child already who is definitely not perfect (!) I think he is more than perfect and I am sure that goes for all of you who have posted here. Thanks. x.

OP posts:

aloha · 06/01/2004 16:17

I don't know Twinkie, my scanner (at Kings) was lovely, had a sense of humour definitely and we had a chance of ds have ds (!) of something similar to you madgirl - about one in 800 I think (hard to remember) at 37. She strongly advised me to have no more tests as my result was 'good' and the risk of m/c was much higher and my ds had no other abnormalities/potential problems that could be seen on a scan. I was so grateful to be given this advice rather than just be told 'it's up to you'. I also agree that if you don't want to terminate then CVS does seem pretty pointless.

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