Nuchal /blood tests

SallyP · Post by **SallyP** » Fri Aug 01, 2003 12:21 pm

Dear All, I went for my booking in appt this week at the hosp which was fine, and also had a nuchal scan together with Primark blood test. However the result has come back with a 1 in 140 risk of Downs, so am now petrified. I now have to wait until after 18th August to have an amnio then 2 -3 further weeks for the results to come back so am really worried and don't know how to get through the next 4 -5 weeks!. The fold itself on the scan seemed fine at 1.8 (over 3mm is considered at risk) so on that score I feel a bit reassured, but then the risk has come back elevated - I really don't know what to think - apart from sheer terror!

Jo Locker · Post by **Jo Locker** » Fri Aug 01, 2003 1:29 pm

Dear Sally, its no good me saying dont worry. But try if you can to focus on the bit of information that reassured you - the fold at 1.8 which is well below the danger level, rather than the statistics. Its an awful long time for you to wait with that worry on your mind, I really feel for you. Once you have the joy of being pregnant, you just live from scan to scan don't you? Come on, chin right up, think only of the best outcome, which I'm sure will be the case. Lots of Love - Jo.XXXXXXX

suzanne · Post by **suzanne** » Fri Aug 01, 2003 6:45 pm

Hi Sally, had to respond to your post, as we went through the same thing in May, and it was horrendous! I decided against having the amnio, because although I really felt that I needed confirmation one way or the other, I knew that it was too late in the day for me to do anything about it. I only had the blood tests, by which time I was twenty weeks, and so had been feeling the baby moving. The other factor for me was that the risk of a miscarriage due to the amnio was higher than the risk of a downs baby. I'm amazed that you can't have your amnio straight away, as we were told that it could be done just as soon as we wanted it. We were also advised that they can fast track the results, if you pay of course. I think she said that the lab charged £150 and the results would be back in 48 hours, they carry out further tests which still take the two weeks, but can at least confirm situation re downs. It's now a couple of months since our scare, and whilst we both do still worry of course, it's nothing like we did at the time. Try and tell yourself that they're statistics, and your far more likely to be one of the 139 with a perfectly normal baby. Also, when it happened to us, my brother trawled through lots of sites on the internet, and you'd be amazed at how different hospitals go on different figures, which potentially means that you may be considered a risk at one but not another. It's no good me telling you not to worry I know, because I was an absolute basket case, but I promise you, you do start feeling less scared and worried. I don't know about you, but I wish I'd never had the test, and I'm pretty sure I wouldn't again. I wish you luck with whatever you decide, and obviously hope that your results come back absolutely fine.....and I'm sure that they will. Take care, Suzanne.x

KirstyC · Post by **KirstyC** » Sat Aug 02, 2003 3:37 am

Hi Sally, I am sure this is a worrying time for you both, but just to echo what the others have said really. I was told by my gp that they only do amnio in our area if the risk of downs is higher than the risk of misscarrige ie less than one in 100. The odds are stacked in your favour. If you were a betting person you wouldn't back a horse with a one in 140 chance would you? Also, the nuchal fold test is supposed to be an extremly effective method so try to reassure yourself that this was fine. I know you will worry and it's easy for me to say try not to, just wanted to say hope things start to look better with time as suzanne has said. Love and hugs Kirsty x

Tracey S · Post by **Tracey S** » Sat Aug 02, 2003 6:52 pm

Sally Just don't know what to say - the nuchal is excellent and at 1.8 you should be ok. They give two figures out - one for age and one adjusted risk based on the neck measurement - is yours the adjusted as mine was 1:145 then went to 1:649. A friend of mine has just had hers done and was 1:90 - she is 27 years old so had a massive flap - had the amnio last wed - they fast tracked her and baby is fine. I can't imagine how you must be feeling but these are risk numbers and it is still an outside chance you will have a baby with downs. Take special care Love Tracey xxx

bubblymichelle · Post by **bubblymichelle** » Sun Aug 03, 2003 8:37 am

Sally I know we are all saying to you try not to worry but I know if I was in your situation I would be worrying myself sick. You have to stay strong because everything hopefully will turn out right. I have to decide by the 8th Aug if I want the AFP done. Lee doesn't want me to have it done, he said that all it gives is a percentage but I feel that I need to know. If it come back a high risk though I would just worry myself sick and then I wouldn't enjoy the pregnancy + I know in myself I wouldn't want the amnieo (spelt wrong) done anyway. Hope all will be ok Sally I will keep my fingers crossed for you. Love Shell 15wks 3d pg xx

SallyP · Post by **SallyP** » Mon Aug 04, 2003 9:01 am

Hey girls, Thanks so much for the suppport, it means so much and I do feel a lot calmer now I've had a few days to think about it. I had the Nuchal translucency scan and the Primark blood test (which apparently is more accurate than the normal AFP blood test they offer at 15 weeks or so, as it tests for 4 things while the AFP tests for 2 or 3 I think), so while I have thought about it rationally (thanks also to all your excellent advice), I am happy that the NT was well within normal limits and everything looked fine on the scan. However, what I am now worrying about is what my blood showed, as apparently with the Primark thing it takes 6 factors into account - age, nuchal fold thickness, then 4 blood things, so I am now paranoid that my blood has showed something terrible! Jo and Kirsty - thanks for the advice - you are very sensible so thanks for putting it in perspective! Suzanne - I cant have the amnio yet because I am only 13 weeks,a nd they can't do it until you're over 15 apparently. I wish I'd never had the effing blood test and just had the nuchal scan! thanks for the info on the fast tracking Shell- it's such a nightmare - I spoke to a couple of friends over the weekend who said that they didn't have the blood tests or the amnio, because they'd decided that they wouldn't have a termination if there was something wrong with the baby - in both cases everything was fine - but it's just so worrying isn't it - if you test you panic, and if you don't you panic. I suppose it all comes down to what you and your dh would do if there was anything wrong with the baby - if you wouldn't do anything, then I wouldn't bother having the tests, but it's such an agonising decision, and just opens a can of worms if you get an unexpected result. I thought everything would be ok once we'd overcome endo but no!!! Tracey - brilliant news re your lower risk, you must be so relieved. Have checked and mine is adjusted. Thanks again for all your support girls, I have put it into perspective and do feel a bit better, but am going to give the hosp a ring to try and find out more about the blood tests. love Sally xxx

Helen G · Post by **Helen G** » Mon Aug 04, 2003 9:07 pm

Hi Sally Glad to hear you're sounding a bit more positive today! It's all a horrible worry - isn't it? You worry about whether or not to test then you worry about the results, then you worry about whether or not you should have further test?! I've been reliably informed that this continues for at least the next 9 months!! As some of the girls have already said, even though 1:140 sounds scary, it's still an incredibly low risk! I believe it works out about a 0.7% chance of having an affected baby? I'm afraid I don't know anything about the Primark test but maybe you should have a chat with your doctor about the other 4 results if you're worried. I'm sure he'll put your mind at rest! Let us know how you get on and in the meantime, take it easy! LOL Helen xx

max · Post by **max** » Tue Aug 05, 2003 1:28 pm

Hi Sally HoW are you getting on? I don't know where you had your tests done, but I'm 38 and we went to the Fetal Medicine Centre in Harley street for our nuchal scan and associated blood test. As it was we had a very low risk so took it no further. However, if you decide on more tests, you should have been able to have done CVS (C

max · Post by **max** » Tue Aug 05, 2003 1:35 pm

Hi Sally HoW are you getting on? I don't know where you had your tests done, but I'm 38 and we went to the Fetal Medicine Centre in Harley street for our nuchal scan and associated blood test. As it was we had a very low risk so took it no further. However, if you decide on more tests, you should have been able to have done CVS (Chorionic Villus Sampling) pretty much straight away. The results are much quicker than with amnio, with similar risks. I can recommend this place really highly, and it gave us great assurance. We even went back there for a private 20 week scan as they take much more time than any local hospital. Having gone through all this to get pregnant, you owe it to yourself to have things explained well and feel you're having the best of care. Both scans were £100-150, which compared to the treatment seems quite low for the benefits. Let us know how you get on. Take care MAX

SallyP · Post by **SallyP** » Fri Aug 08, 2003 9:25 am

Thanks for all the support and advice, girls, I really appreciate it. We're on holiday next week so I have an appointment at the hospital in 2 weeks to discuss the next steps, and whether to have amnio or cvs. I do feel a lot more optimistic - I spoke to the lab re the blood tests and they were saying that the various markers in the blood go on average levels, so it's more a case of giving gambling odds than a true predictor, so I do feel a lot more balanced. Hope you lot are all fit and well and will keep you updated. love s x

Tracey S · Post by **Tracey S** » Fri Aug 08, 2003 2:34 pm

Sally just wanted to send you a massive cyber hug and glad to say things have perked up a bit. Sending you lots of love Tracey xxx

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