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Pregnancy

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

Nuchal fold scans and blood tests - someone please TELL me what to do

39 replies

KIQFTM · 20/10/2004 16:22

I know there are lots of threads on this and I have read them but need a bit more advice here please.

Have just rung about arranging one at Leeds - total cost for scan and blood tests = £185 - steep I think and bloody annoying that I should have to pay for it at all.

Anyway, person I spoke to was telling me that detection rates for NF scan alone were (for my age) - 82% and false positive rate of 22%. With a blood test at the same time, these rates changed to 92% detection and 14% false positive.

The false positve rate doesn't seem that much of a drop to me. Are they trying to get me to spend more money? I know this isn't a diagnosis. Am so rubbish at making decisions.

Did all those who had a nuchal fold have the blood tests as well?

Also, anywhere else in the North/North West that does these scans?

Thanks

OP posts:
teabelly · 26/10/2004 13:01

Your right Uwila in that it contributes to the test % rate results, but the bloods are testing the same things that you get tested for at your hospital bloods a few weeks later. I haven't heard of many cases when the NF test gives a % rate and the accompanying blood test increases the likelihood of DS. So all I meant was if the NF test gave a low % rate of DS or abnormalities then if the cost is prohibitive you could just do the NF test and wait a few weeks for the free blood tests IYSWIM

Uwila · 26/10/2004 13:12

Yes, but it wouldn't be calculated into the same result at the nuchal scan. And, if my number was borderline, then I would want it to be as accurate as possible.

Although I must emphasise that I haven't a shred of medical training so I'm probably not qualified to ramble on like this...

Thomcat · 26/10/2004 13:16

KIQFTM - Firstly congratulations on your pregnancy, hope you and bump are both doing well.

I am a mother to a winderful 3 year old girl, Lottie, who has DS, not that you'd really know it if you met her, you might just think she was a bit younger than she really is.

I just wanted to offer you my support and to say that if you ever want to talk about DS and be reassured in anyway please feel free to email me through mumsnet.

I had a blood test when i was pregnant that put me in the low risk group. i decided not to have any more tests, so glad i didn't. Yes I was shocked when Lottie was born with DS and there was an element of grieving for the child we thought we were having, took us a day to get over it and have never looked back and I thank god for my healthy happy daughter every day.

Whatever you decide I'm here for you if you want to talk and I wish you all the best.

TC xx

jolly4 · 26/10/2004 14:06

hi thomcat just reading this thread just wondered how old you were? i had just the routine blood tests and they came back as the letter said normal result no need for futher tests on my letter,so felt relaxed then when i had the 20week scan no probs detected i thought if bloods were ok an they dont offer amni then you are classed as safe i am 39 and 24 weeks pg

Thomcat · 26/10/2004 14:09

I was 30 when i fell pregnant, 33 now.

velcrobott · 26/10/2004 14:15

My friend was 34 when she had her DD, blood tests showed a minimal risk, she was told this wasn't worth investigating further... her DD has DS and they love her to bits (like Thomcat - it's a bit of a shock at first!)

The issue is to think about what you would do if the results where to say there is a high risk... if you are not willing to terminate, do you need to know ? Some people say yes so they can get their head around the idea... others say no. I also know of someone who was told her child would have DS and it didn't. It was a shock for her too.

Thomcat · 26/10/2004 14:26

The thing is though with getting your head round it, is that you are presented with a load of things that CAn go wrong, a list of things that MIGHT happen. That's awful and not something you CAN get your head round. Imagine any mother beng handed a list of things that might happen to your child! You'd spend every day worried sick! That's whay I'm glad I didn't know. my DD is healthy, born that way and so far stayed that way, she's incredibly funny, has an amzing sense of humour, I mean she just cracks us up every day. That wouldn't have been on any list of what to expect from my child! She's strong willed, stubborn, cheeky, naughty, cute, happy, sociable, loving, cuddly, a bit slower to learn some things, bright as a button, a great sleeper, a good eater, an amzing daughter. If i'd known before the list would have read a lot differently to my list, I can't think of one negative thing to say about her or about DS and never met a mother of a child with DS that doesn't feel the same as I do.

However I still support whatever decision anyone else makes, no matter what it is, and will be there for anyone who needs me.

janeybops · 26/10/2004 15:08

I was told to only do one of the tests as they can give conflicting results. My GP told me that the nuchal fold test was slightly more accurate so I had that only. Cost me £90 at Queen Charlotte's about 1.5 years ago. I could have had the blood test for free at the hospital I was booked into, but decided to go for the more accurate one. The 3D scanner there is fantastic by the way!

KIQFTM · 26/10/2004 16:41

Thank you very much for your replies everyone.

I'll discuss with the sonographer next week about whether to have the blood test as well. Just wary of being 'sold' it.

Thank you very much TC for your posts. I'm quite a regular here so I know how wonderful Lottie is. And I know how wonderful a mum you are as well. I think I would want to know as much as possible in order to get my head around it. It's not my first child but it is my partner's. Think he still has the notion that everything is simple and straightforward and doesn't want to think about the alternatives.. Think he assumes (assumed) that if there is a worrying diagnosis/risk assessment, then there would be no baby. I can't see things as black and whitely as that. Think I woudl find, for me, a termination very, very difficult to cope with. But I'm also conscious that I'm high risk because of age and I am very scared of an uncertain future (aren't we all, I know). Sorry, I'm just thinking out loud here.

Have another question though. Should know this but have forgotten. Does the nuchal fold test only look for DS?

OP posts:
bundle · 26/10/2004 16:47

this was a press release from last yr, about a study of the quadruple test. hth

Results from five-year study show ?Quadruple Test? most effective at detecting Down?s Syndrome

Results from five years? research of antenatal screening methods for Down?s syndrome, involving close to 50,000 women, are published in The Lancet this week (8 March 2003).

Led by Professor Nicholas Wald of the Wolfson Institute of Preventive Medicine at Barts and the London, Queen Mary?s School of Medicine and Dentistry, the project involved screening 46,139 pregnant women for Down?s syndrome babies in 14 hospitals in the South East from 1996 to 2001. Results show that the quadruple test is far more effective than screening based on maternal age alone. The quadruple test is also substantially better at detecting Down?s syndrome than the double test, and moderately better than the triple test. This test is used throughout the world but it is not yet the standard test in the UK National Health Service.

Professor Wald said: "These results confirm the value of early second trimester serum screening over screening by use of maternal age alone, in contradiction to recent opinion, and lend support to the decision of the UK government to offer serum screening to all pregnant women. The study also confirms that in the second trimester the quadruple test is sufficiently more effective than the double or triple tests that it should be regarded as the test of choice at this time of pregnancy."

Screening for Down?s syndrome is widely practised throughout the world early in the second trimester (weeks 14 ? 22) of pregnancy. A number of tests are used to calculate the risk of Down?s syndrome, including the double test, triple test and quadruple test, which measure two, three and four ?markers? in the maternal serum, combined with the mothers age when she is due to give birth.

The women in this study were screened during the second trimester of pregnancy using the quadruple test which measures four markers found in the maternal serum ? alphafetoprotein, unconjugated oestriol, human chorionic gonadotropin and inhibin-A.

The results showed that the detection rate with the quadruple test was 81% (71 of 88 Down?s syndrome pregnancies were detected) and the false-positive rate was 7% (of the 46,105 unaffected pregnancies, 3,200 falsely tested positive for Down?s syndrome).

The quadruple test was shown to be more reliable than using maternal age alone (i.e when the four blood markers were ignored and a maternal age of 35 years and over was the criteria for selecting women for a diagnosis test). Using maternal age alone only 51% of cases were detected and the false-positive rate was 14%. The quadruple test was also better than screening which relied on the measurement of two or three markers in the maternal serum instead of four.

KIQFTM · 26/10/2004 16:50

Cheers bundle. Think I'm even more confused now though. The quadruple test is or isn't the one you get when you have the nuchal scan? My hospital does do the triple test - booked for Christmas Eve! Oh God, I wish it was the 1960's

OP posts:
bundle · 26/10/2004 16:53

the quadruple measures one more hormone than the triple. i had a blood test which was sent through to barts (it's also called the barts test, because they developed it) in a special pack. i think nuchal combined with a blood test is considered most accurate, but still won't tell you if your baby has x, y or z. just gives you a figure that might be lower/higher than the usual risk for someone of your age/stage of pregnancy. i know it's tough.

KIQFTM · 26/10/2004 16:56

Yes, it's the Bart's test that my hospital do. I'll sort of go with the flow on this

OP posts:
Thomcat · 26/10/2004 17:32

LOL at wishing it was the 1960's.

thinking of you. I'm sure it'll all be fine hon' and really hope you can enjoy this pregancy and look forward to a healthy happy child.

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