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Downs syndrome test?

(52 Posts)
faintpinkline Fri 06-Jan-12 11:00:41

What are you views about the test? Will you be or have your had it and how do you / did you deal with the results.

DP wants me to have it and abort if the baby has DS but I'm not so sure

iwantbrie Fri 06-Jan-12 11:07:27

I had it after a relativley high nuchal scan result & the result came back fine. However it's a very emotional time if you do decide to have it, the wait for both the test & result can be excruciating and your DP has to realise that it's your decision.
I would repost this in the antenatal tests section if I were you, I got loads of support there x

surfmama Fri 06-Jan-12 11:10:52

hi faint I could tell my other half thought the safe as your DP although I would have kept the baby whatever. had the nt test and was fine despite my age (38 but been trying forever! so feel older!) i don't think you can decide until you come to it and if you would keep the baby anyway no point in test. I had it as I suppose I just rolled down that route, seems to happen to me with anything medical...!

surfmama Fri 06-Jan-12 11:11:09

sorry meant 'same'

AnEcumenicalMatter Fri 06-Jan-12 11:32:59

We decided not to have it.

Before getting pregnant, I always thought I would want the test and wouldn't continue with the pregnancy if it was positive for Downs. But after having my first scan, speaking with the consultant and talking it over with DP, I realised that I felt differently about the test when we were now talking about a real baby. Thankfully DP agreed with me.

A good friend of mine found following 20 week scan that her baby had Downs and other defects which meant it was unlikely to survive more than a few hours after birth (if they made it to term at all) so she decided to terminate at that stage. DP and I have decided to take the same approach (I'm 16 weeks now), ie. wait and see.

blackcatsdancing Fri 06-Jan-12 11:33:08

what test are you referring to? the NT scan with combined bloods will only give you a statistically chance of having a downs baby, it won't tell you definitively, for that you need a diagnostic , invasive test such as cvs or amnio. If you have a diagnostic test you really need to think in advance of what you'd do it the result was positive for an abnormality. You may decide to proceed with pregnancy regardless and use the time to learn what is in store for you and to prepare yourself. or you may decide to have a termination.
look at the arc website for more info on antenatal tests and choices

AnEcumenicalMatter Fri 06-Jan-12 11:34:11

Posted too soon ..,

And if defects are detected at 20 weeks, then we'll re-evaluate then.

blackcatsdancing Fri 06-Jan-12 11:34:18

FWIW i am having the NT scan with blood work at 11+3 but i'm 43 .I'd want to know. Lots on this in antenatal tests section.

wannaBe Fri 06-Jan-12 11:36:25

I've asked mn hq to move your thread to antenatal choices section.

Dons testing is a very emotive topic on here and there are many people who have ATC topic hidden for that reason, so your thread might be better off there.

KatAndKit Fri 06-Jan-12 11:38:00

If you are 43 then you may find your results come back as "higher risk" anyway just due to your age. But even someone who has only a 1% chance of DS gets a higher risk screening. 99% of times the baby is ok.

If I had got a higher risk I think I might have considered CVS/amnio as they are the only way to know for sure. But I would have wanted to be given a specific odds ratio rather than just higher risk. For example I might have risked a cvs test for a 1/5 chance but not for a 1/100 chance.

Probably you should see what the NT test brings and take it from there.

Happenstance Fri 06-Jan-12 11:40:08

I had the NT because i was concerned about Edwards and Patau, i wanted to know what the risks were and if they had come back high i would have had the CVS, but i personally would have gone through with a Downs syndrome pregnancy, i just didn't feel i would be able to continue a pregnancy which would have been incompatible with life.

blackcatsdancing Fri 06-Jan-12 11:42:06

katandkit thanks, my MW has already said i'll be told high or low risk only at the local NHS hospital so i'm following up with same test done privately at fetal medicine in london a few days later. I'll see what they say, they can do CVs same day but if my odds are very low i doubt i'll have that done.

YuleingFanjo Fri 06-Jan-12 11:44:14

Only the Amnio or the CVS will be able to tell you for certain.

I had a nuchal scan and was scared by the results (1/80 for Downs) so had the Amnio.

Your BF would be crazy to expect you to terminate just because of a high risk Nuchal result so you would have to have the Amnio or CVS to be certain. If I ever get pregnant again I will just go straight for an Amnio.

I would terminate for a chromosonal disorder but that's just me, others wouldn't.

kdiddy Fri 06-Jan-12 12:04:41

I think you have to decide first of all whether you would have an amnio or CVS if you came back as high risk. Don't forget these procedures carry their own risks as well. I took the view that I wouldn't want to run the risk of amnio or CVS therefore there was little point in the initial tests. But I also knew I'd have continued with the pregnancy regardless.

dreamc1 Fri 06-Jan-12 12:38:37

We didn't have the test for a few reasons; we didn't want the worry if the blood test and nuchal test came back with a high risk, and there was no way we would risk the 1% miscarrage risk that comes with amnio.
What will be will be.

blacktreaclecat Fri 06-Jan-12 14:47:26

Some Downs pregnancies are incompatible with life. Ours was.

faintpinkline Fri 06-Jan-12 16:38:30

Sorry for posting in the wrong place, I hope I didn't upset anyone. I hadn't even notice this section blush

One of the reasons I don't want the second stage tests is because they carry a slightly higher risk of miscarriage than I probably have of having a downs baby at my age though presumably if teh first stage tests come up positive the chance of a positve test for downs at stage 2 increases hugely Very confused and not sure I could abort. However I did not knnow that downs can be incompatible with life and that puts a different slant on it.

Sorry for badly written post really not sure waht to do now

PrincessApple Fri 06-Jan-12 16:52:11

Hi. I don't plan on having the screening done again. DH and I said yes cos it was the expected thing and didn't think it through.

It came out as high risk, but only 1 in 89. So there was the same risk from CVS as there was of getting a.positive DS test result.

Since we personally wouldn't consider termination, I declined CVS, although I was told over the phone only and had to make a decision there and then.

After a week of stressing, we realised.we couldn't live with the uncertainty and doubt and next week I go to the fetal medicine centre for an early anomaly scan. If Prof Nicolaides thinks it looks suspicious, we'll have amnio.

But I wish we'd never had it done for the worry it's caused. There are so many conditions that can't be diagnosed with testing in the womb, I'd rather keep ignorant until either the worst happens (in which case nature would have decided) or love the baby we have for as long as we have it.

I hope that doesn't come across judgemental. Everyone decides tgese things for themselves. I'm in the midst of anxiety at the moment and am struggling.

EggletinaClock Fri 06-Jan-12 17:08:52

People often don't realise that Down's syndrome is frequently accompanied by major heart defects in particular, that can be totally incompatible with life, increase chances of stillbirth or neonatal death and lead to a greatly reduced lifespan, even with surgery. The people you see living with Down's are a fraction of those conceived with it. Approximately 90% of people who find out prenatally terminate.

About fifty per cent of baby's with Down's don't get picked up by scans and screening. Presumably if these are the ones without major defects, they are more likely to make it through to birth.

I've just terminated for Down's diagnosed by CVS, the pregnancy was failing anyway so it didn't feel like much of a choice. However, I would have still terminated even if the pregnancy wasn't failing.

Happenstance Fri 06-Jan-12 17:44:35

I'm so sorry blacktreaclecat i hope i didn't upset you, I'm afraid i don't know much about these things, i should make it clear i would only carry on with a down syndrome pregnancy if the baby was likely to survive, i am not strong enough to carry on a pregnancy where the baby wouldn't, i am sorry if i came off as judgy in any way.

blacktreaclecat Fri 06-Jan-12 18:09:03

You didn't upset me. And we would have terminated a Downs whatever, like EC. I just thought you needed to know that t21 babies are often very poorly indeed.

Ishtar2410 Fri 06-Jan-12 19:20:57

I terminated at 18 weeks for T21. Prognosis was that our baby would not survive to term. He had major heart defects.

We always said we wouldn't even consider it, but when we had the results from the blood tests (this was before nuchal was widely available on NHS) we followed things through to the final conclusion - we had a risk of 1:70 (I was 37 at the time). Looking back, it was obvious from the 12 week scan that something wasn't right.

As far as I know they wouldn't let you terminate on a statistical result - you have to take it further and have the diagnostic test, either CVS or amnio.

We have since had another baby, but had no screening tests - went straight for amnio as the risk of miscarriage was significantly lower than the risk of carrying a baby with T21, 1:200 compared with the guide risk of 1:85.

We would have terminated again if there had been a chromosomal abnormality. It saddens me to think that we would never have met him, but from our previous experience we knew how we felt about continuing the pregnancy.

catsareevil Fri 06-Jan-12 20:43:05

In response to Ishtars point, you can terminate on the basis of a high risk result if you want to - it may not seem logical, but you would not be prevented from doing so before 24 weeks.

blacktreaclecat Fri 06-Jan-12 20:47:49

They would have let us terminate without the test. But nuchal was 11mm with severe hydrops, no nasal bone and reversed flow in ductus arteriosus. All these add up to a hopeless prognosis. The plan was initially no cvs, medical management then post mortem. I really wanted surgical management so had cvs to get a diagnosis as post mortem more difficult after surgical management.

WipsGlitter Fri 06-Jan-12 22:00:11

We didn't have any of the tests. Not even the bloods. Our child was born and he has downs. He has no other health problems. It was devastating when he was born, cried buckets. Love him to bits now.

It is my understanding that many pregnancies where the foetus has downs will spontaneously end - miscarriage, so many people never know their child had downs. I know a few other parents with children with downs and none of them are particularly poorly.

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