Nuchal translucency screening? To test or not to test?

[Beccagal]

Hi Ladies, I have been reading about Nuchal Screenings and trying to make sense of why I would put myself through this.
My question to you is .....AM I MISSING SOMETHING??


This is what I have learned most importantly;

Normal screening result (screen negative) isn't a guarantee that your baby has normal chromosomes, but it does suggest that a problem is unlikely. Screening tests don't detect all cases of Down syndrome, so they may identify you as being at low risk when your baby really does have Down syndromeThe NT scan alone will detect about 70 to 80 percent of babies with Down syndrome. Hmmm, OK so a negative result is not a sure thing?

Likewise, an abnormal screening result (screen positive) doesn't mean that your baby has a chromosomal problem — just that he's more likely to have one. A false-positive result is one that suggests there may be a problem when, in fact, there is no problem. Based on this false-positive result, their mothers may go ahead with invasive diagnostic testing that they otherwise might not have. (And they'll probably worry more, too, until they know for sure that the baby is fine.)
Ok, so a positive result is not a sure thing either ? I will just spend my entire pregnancy sad, nervous and worried ?

Nuchal scanning alone detects 62% of all Down's Syndrome with a false positive rate of 5.0%, which is considered a high percentage

So I ask my self this one important question?
Q : If screening shows that there MAYBE a possibility that your baby will be born with down syndrome or another chromosomal problem would you abort?
My answer: NO WAY

What have you ladies decided, am I missing something?

 

[Ruth2307]

When my MW told me about all the scans available to me, she presented the NT one in such a way that it was standard for someone of my age (!) to have. To be honest I didn't really know what she was on about and I heard myself agreeing to it without being in possession of more facts. I was just pleased that it was non-invasive and I was going to use the results to help me prepare as I personally wouldn't terminate due to disability.

It was only after looking into it more fully and upon further reflection that I have come to a similar conclusion to you - how much will it help me given that the results are still a bit woolly? I'm not so sure now...

Obviously it's one of those very personal decisions that only you as a mother (or couple) can make but my God what a decision!

 

[dizzybella]

Hi Ladies, I have been reading about Nuchal Screenings and trying to make sense of why I would put myself through this.
My question to you is .....AM I MISSING SOMETHING??


This is what I have learned most importantly;

Normal screening result (screen negative) isn't a guarantee that your baby has normal chromosomes, but it does suggest that a problem is unlikely. Screening tests don't detect all cases of Down syndrome, so they may identify you as being at low risk when your baby really does have Down syndromeThe NT scan alone will detect about 70 to 80 percent of babies with Down syndrome. Hmmm, OK so a negative result is not a sure thing?

Likewise, an abnormal screening result (screen positive) doesn't mean that your baby has a chromosomal problem — just that he's more likely to have one. A false-positive result is one that suggests there may be a problem when, in fact, there is no problem. Based on this false-positive result, their mothers may go ahead with invasive diagnostic testing that they otherwise might not have. (And they'll probably worry more, too, until they know for sure that the baby is fine.)
Ok, so a positive result is not a sure thing either ? I will just spend my entire pregnancy sad, nervous and worried ?

Nuchal scanning alone detects 62% of all Down's Syndrome with a false positive rate of 5.0%, which is considered a high percentage

So I ask my self this one important question?
Q : If screening shows that there MAYBE a possibility that your baby will be born with down syndrome or another chromosomal problem would you abort?
My answer: NO WAY

What have you ladies decided, am I missing something?

Ofcourse its a personal decision but i'm wit you woohoo!! Bloody stupid tests - my son has DS and had no indicators- i was pushed and pushed by the hosp to be tested during my current pregnancy yet because i already hav one child wit DS ofcourse my results are gonna come back showing raised risk before they even start the test so y wud i bother?!

 

[Ruth2307]

I think these tests have their place and I'm fascinated that someone somewhere saw the link between the collection of fluid under the baby's neck at exactly this point in pregnancy and the possibility of Down's.

My MW told me that when she was new to midwifery and pregnant herself 19 years ago they had only just commissioned the research in UK and they were looking for older pregnant women in this area to go to London to be scanned. By the time she had her second child the scan was only available in private hospitals. By the time she had her third child it was becoming more available but you'd have to pay for it. Today you can get a scan on the NHS at hospitals with the correct equipment. Some would call that progress.

Who knows, at some point it could be a routine scan for absolutely everyone the same way we get all the other scans. Just think, none of our mothers had any kind of scan never mind NT ones when we were born!

 

[seoj]

We made the decision to get the less evasive screening done (i.e. Scan measurements and blood work)- but honestly, I just felt there was no issue... and it was confirmed, which only helped.

But yes, there is that chance of getting a "false positive" which can only be confirmed by Amnio (which there was no way I was putting myself or baby through that). So we knew, if there was a risk, we'd have to wait and see. But for us, it would have given us the chance to prepare for that possibility. But I can totally see how unnecessary worry is not good.

It's a very personal decision... I would just do what feels right for you hun.

Best of luck!

 

[ciarhwyfar]

Okay, maybe I am missing something here. Is someone saying that they only offer the NT test for "at risk" and/or older mothers in the UK? I admit, I already thought it was crazy that the UK only does glucose screens for high risk/high BMI patients but being low BMI doesn't guarantee that you can't get gestational diabetes, hence the reason all pregnant women have the GTT and are also offered the NT screen.

If I misunderstood, feel free to ignore this post.

 

[Ruth2307]

Okay, maybe I am missing something here. Is someone saying that they only offer the NT test for "at risk" and/or older mothers in the UK? I admit, I already thought it was crazy that the UK only does glucose screens for high risk/high BMI patients but being low BMI doesn't guarantee that you can't get gestational diabetes, hence the reason all pregnant women have the GTT and are also offered the NT screen.

If I misunderstood, feel free to ignore this post.

Yes that is what I have been led to believe about the NT scan here in UK.

And you're spot on about GTT. I have been offered one purely because I am deemed high risk: a higher than preferred BMI, my ethnic background and also my mum has tablet controlled Type 2.

 

[kosh]

i've been doing nothing but research on this

the thing is screening tests are just that, screening. they will give you a probability but not a certainty. and on top of that, there are false high risks and also false low risks!

i think the bottom line is 'do you (for any reason) need to know?'
if you don't need to know, i would not have them done.
if you do need to know, i'd go for a disgnostic (not screening) test.

very personal decision, of course.

 

[xxembobxx]

I understood the NT test was given to every woman now, regardless of age?
I just said yes with my last baby but the measurement was really high and we had to go back 2 weeks later. Longest 2 weeks of my life! Then they decided the measurement was fine so nothing to worry about. But of course the worry was always there that they had got it wrong the second time but it was fine.
I had the NT test this time and it was really low so although I haven't got results back I'm pretty sure it'll be low risk.
I did have a private scan before though and they did the NT test but also used other measurements. Additionally they offered an in-depth screening which gave a really high percentage of accuracy compared to the NHS one. It was £190 which includes the scans and blood tests but I didn't feel the need to pursue it. I would have if I had got another worrying result off the NHS though.
I think if you know a positive result for Downs would not stop you continuing the pregnancy then it's a pointless test and needless worry. But then I suppose it's whether forewarned helps you to be more prepared if there are complications.

I hadn't heard of the test until I had my LO 1 year ago - I wonder if the birth rate for children with Downs Syndrome has changed much?

 

[Beccagal]

i've been doing nothing but research on this

the thing is screening tests are just that, screening. they will give you a probability but not a certainty. and on top of that, there are false high risks and also false low risks!

i think the bottom line is 'do you (for any reason) need to know?'
if you don't need to know, i would not have them done.
if you do need to know, i'd go for a disgnostic (not screening) test.

very personal decision, of course.

Thank you thank you thank you

 

[Ruth2307]

Perhaps it's the good old NHS postcode lottery - i.e. the availability of testing all depends on where you live!

I understood the NT test was given to every woman now, regardless of age?
I just said yes with my last baby but the measurement was really high and we had to go back 2 weeks later. Longest 2 weeks of my life! Then they decided the measurement was fine so nothing to worry about. But of course the worry was always there that they had got it wrong the second time but it was fine.
I had the NT test this time and it was really low so although I haven't got results back I'm pretty sure it'll be low risk.
I did have a private scan before though and they did the NT test but also used other measurements. Additionally they offered an in-depth screening which gave a really high percentage of accuracy compared to the NHS one. It was £190 which includes the scans and blood tests but I didn't feel the need to pursue it. I would have if I had got another worrying result off the NHS though.
I think if you know a positive result for Downs would not stop you continuing the pregnancy then it's a pointless test and needless worry. But then I suppose it's whether forewarned helps you to be more prepared if there are complications.

I hadn't heard of the test until I had my LO 1 year ago - I wonder if the birth rate for children with Downs Syndrome has changed much?

 

[creatingpeace]

I don't think you are missing anything at all. After much research I eventually decided to get the NT testing done. It was a comprimise I made with OH as he has a special needs child already. I got the NT screening done and knew I would not have amnio regardless. Anywyas I am gla dI got it done, besides you get an extra scan...which is always a bonus. Got my "all clear' yesterday and have peace of mind now, although nothing is guarenteened...but what in life is? It is a personal desciasion but one I am happy that I made.

 

[Omi]

Ive just had this conversation with hubby and we decided to only have non-invasive screening simply because if something comes up we're forwarned but apart from that it changes nothing.

Its a very personal decision and one everyone must weight that up themselves i guess...can be very difficult stuff though...

 

[3rdTimesCharm]

I have been offered this with each of my pregnancies. My OB told me that there are so many false positives that should would not reccomend doing it. Plus it wouldn't change a thing in my mind about my baby. Except for worry for nothing if it were a false positive. I will take my child as God intended him or her to be. I am just blessed to have this opportunity again.

 

[Bilberry]

It's been interesting to read this and it seems you all have been quite lucky. You do know the screening is not just for DS?

This is our story: We wanted the screening. The NT scan showed the baby had 1/7 chance something being wrong. The blood test and scan combined showed 1/5 chance. My sister had a DS daughter, who lived only 3 months, so we opted for the CVS. They tried to do it twice without luck.

I have never been as stressed in my life. We then had to wait for the pregnancy to be past certain weeks and when I was 17 weeks pregnant, the amnio was done. The initial results were encouraging: no DS, no T13 or T18. Two weeks later we got the last results, which showed the baby has extremely rare T22. The median age of a T22 baby is 4 days. The doctor then scanned the baby and told the last bit of bad news: the baby's heart would give up in couple of weeks and he would not live a day. At that point I was 19 weeks pregnant. We opted for termination instead of waiting for those couple of weeks listening which kick is the last one.

The whole ordeal was horrible, but I would not change a decision we made. Couple of my friends say they think I knew something was wrong from the beginning. I cannot say.

I am now pregnant again, 7 weeks. We have already told we want the CVS done as soon as possible. Because of my age and because of one trisomy baby, we have 2% change for another trisomy (any trisomy) baby.

However, these decisions are deeply personal and no one should ever jugde anyone for whatever they decide to do. I hope you all have stressfree pregnancies. Mine will never be, not after the first one.

 

[Bilberry]

^ I forgot to say that for us screening was a stepping stone for CVS and amnio. If you have decided not to do CVS/amnio, then perhaps you opt out of screening too. I wasn't sure about doing CVS/amnio until they said there was a real chance something being wrong.

 

[knitbit]

I wanted to test because the number can tell you quite a bit if it is *really* high. I lost a pregnancy last year with a NT of 5.3. I went into the test knowing that I would be very happy with the result if the number was <2.5 regardless of the odds. Luckily my twins have good numbers. I am at high risk for undergoing amnio (they have to do it twice and I have blood antiibodies against the babies blood), so I will probably just be happy with the results.

 

[hellywelly]

I totally agree that the NT combined test does not necessarily 'guarantee' a definitive answer, but that it would lead to having amnio testing which apparently is nearly 100% accurate. I don't think the option would be open to abort after the NT testing. It is purely self choice - I had the NT testing so I could be prepared for myself and my hubby, and also it is not a decision taken lightly to have or not to have a baby with downs or any abnormalities so to be mentally prepared was always my first option. If i had came back high risk I would have had the amnio testing. I also have the GTT testing booked in August - my BMI is nearly 30 and I have a brother who has type 2 diabetes. Apparently if I come back positive they can control this with tablets etc. I don't think that any of the testings are conclusive but it is like anything it is all about probabilities - did anyone watch the 'Tonight' programme about ladies leaving pregnancy till late - there was a lady who was strongly advised to the have the downs test but she refused - she ended up having adowns baby and wished that she new before hand so she could have been prepared. I think that the NT testing is about either leading up to amnio or be deemed as low risk - this is my understanding of it anyways xxxx

 

[Patti Cakes]

Ive just had this conversation with hubby and we decided to only have non-invasive screening simply because if something comes up we're forwarned but apart from that it changes nothing.

Its a very personal decision and one everyone must weight that up themselves i guess...can be very difficult stuff though...

This is us as well. I am also telling myself that false positives happen A LOT and that I will NOT get all spun up with worry. My cousin's best friend had a baby at 42 and when she had the scan they told her most like the baby has DS based on the results. Her baby is TOTALLY fine! I also look at it as another scan to peek at the little one

Also I will NOT be having an amnio. My doctor said here's how I can make a decision about the amnio - If the amnio came back positive for something, would you abort? I said "Nope!" Then he said he would not recommend the amino. That's how some people feel about the NT scan. So yeah, it's totally a personal decision. I just thought it's a nice non-invasive way to be forewarned.

 

[Bilberry]

hellywelly: after the nt scan we were given 3 options, not necessarily in this order: not to do anything, to do CVS or to abort. CVS is done in earlier weeks than amnio.

Also generally, CVS and amnio is not just for DS! There could be any number of other problems that choromosome testing such as CVS and amnio show. Things that kill the baby before the 40 weeks of pregnancy is full. We were in that kind of situation. The doctor gave absolutely no hope. And we wouldn't have known this without nt scan and amnio (they couldn't perform CVS for structural reasons).