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Very scared!! Got CVS test at UCH - been told at high risk of having DS baby just now

(14 Posts)
Amnewtoallthis Tue 06-Nov-12 14:52:17

Am 12 weeks 5 days preg with DC2. Had scan last week, baby was fine, and there were no obvious problems, heart function etc all good. But today had a call from midwife saying my blood test had shown increased levels of HGH (sp?) and that combined with my age meant I fell into the high risk category. So I've got to go and have CVS on Friday. Am feeling really scared right now. Hand holding needed!

coronalover Tue 06-Nov-12 15:09:58

I heard that the blood test markers are not very reliable so try not to panic. Easier said than done I know but try to focus on the fact that your scan was fine which is a major plus.

sending good vibes to you

eagleray Tue 06-Nov-12 15:20:52

Very sorry to hear this has happened to you - I went through very similar a few months ago (was high risk, partly due to age and also blood tests). You will find lots of info and support on the antenatal tests and choices section, if you wanted to post there. There is also a helpline called ARC, who are really good.

Am typing on phone so can't post lots of info but please let me know if you want more handholding/advice.

Will just quickly mention that cvs was an option for me, but was never made to have it. Opted for amnio after lengthy discussions with consultants, and all was ok in the end.

Good luck and thinking of you

MrsHelsBels74 Tue 06-Nov-12 15:25:38

I'll hold your hand. I had a 1:71 risk of Downs with my last pregnancy, from bloods as nuchal translucency on scan was fine. I opted for amnio rather than CVS just due to the slightly lower risk. Anyway, the procedure was fine, my results came back fine & my beautiful baby boy will be 7 weeks old on Thursday. Try not to stress & worry too much (easier said than done I know), you can't do anything to affect the outcome now.

Amnewtoallthis Tue 06-Nov-12 15:31:56

Thanks eagleray I've found the antenatal tests section. Glad to here all was okay with you x

Amnewtoallthis Tue 06-Nov-12 15:33:42

MrsHelsBels74 thank you, I'm going to have a virtual wine as my morning sickness won't let me - not that I've been able to drink or eat much, which is a result of the high hormone levels which also put me in the high risk category. Going to try and distract self for the next few days now.

crunchingautumnleaves Tue 06-Nov-12 15:39:20

Also remember, if you don't want to know, you don't have to have any tests done. Hope whatever you decide works out well for you.

sleepyhead Tue 06-Nov-12 15:46:19

I had 1:27 risk of Downs with this pregnancy and had an amnio last week. The baby does not have Downs Syndrome.

It was a very stressful 10 days from being told the screening result (based on 16 wk bloods) to getting the preliminary results and the all clear for T21, T14 & T18 but I felt that I needed to know now rather than waiting for the birth.

High risk is a subjective phrase and can mean anything from 1:150 or higher. I probably wouldn't have bothered with the amnio if my risk had been lower than 1:50, but that was my personal perception of the risk and other people will have their own tolerance.

Even a 1:4 chance means 75% likelihood that the baby does not have Downs. I personally found it helpful to read up about Downs Syndrome and visit the DS Association site etc to get into perspective what DS might mean for my baby, but again that is something that will vary with the individual.

I'll be thinking of you - it's so worrying to be told that your baby might have a problem.

Amnewtoallthis Mon 12-Nov-12 15:39:49

Thanks all - had results back today - was very quick - and all is clear. My risk was 1:127 sleepyhead with blood and age, on age alone it was 1:60 - so just goes to show. Damn those pregnancy hormones! Am very relieved though. The CVS itself wasn't too bad but I did have to have some paracetemol.

sleepyhead Mon 12-Nov-12 17:22:04

That's great news! Enjoy the rest of your pregnancy.

sleepyhead Mon 12-Nov-12 17:29:48

Interestingly (and a change from when I had my ds in the same place 6 years ago), they've changed the wording that they use in my hospital from "high risk" / "low risk" to something like "your results show that you might want to consider diagnostic testing."

Although I did choose to have the invasive test, I think getting away from the use of "high risk" language is useful to help you focus on what this one result means for you and your baby, not an arbitrary cut off of good/bad. Because for one person 1:500 might feel like a bad result, and for another 1:50 might feel good.

Having said that, my gut feeling is that we're (well, I wasn't anyway) not really equipped to make meaningful sense of the stats. What's 1:27 really? I kept thinking of a classroom full of children, but I don't think it really meant anything. At the end of the day it feels like 50:50 for your baby when you're in that pit of uncertainty - they have a chromosomal abnormality or they don't.

Anyway, enough of my nonsense - you don't have to think about it any more!

Theas18 Mon 12-Nov-12 17:40:07

Many un mumsnetty hugs.

Just have a really good chat with your parter about exactly what you would do should the result be positive and how the test would change things for you before you feel railroaded along a conveyor belt to a destination you didn't want to travel to...

It may be straight forward - you couldnt , for whatever reason contemplate having a baby ( then a child and an adult) with downs and you would terminate. Fair dos...

Bt if you are going to proceed anyway with the pregnancy then maybe a procedure that carries a risk of loosing the baby ( however skilled the operator) might nit be for you.other scans etc further along can give a better idea of downs associated features etc.

Normal CVs doesn't guarantee a "normal" baby after all just that it doesn't have specific chromosome defects.

redyellowgreen Mon 12-Nov-12 22:55:08

Glad it's all looking better OP smile

For anyone else reading this - bloods alone are NOT reliable. I got a 'high' risk based on bloods alone (nuchal was on the small side and I was 30 so age not really a factor) - we went for a private scan which showed zero problems (which could be seen at 13wks obviously) and they explained that some women naturally produce different levels of pregnancy hormones to the levels considered 'normal'. Not bad, not dangerous, just different.

So don't rely on bloods alone.

Amnewtoallthis Tue 13-Nov-12 11:37:57

Yes - luckily I found out my cousin - who is older than me - had to have CVS tests in both her pregnancies - she was 41 and 45 and the only reason was because of the higher HCG levels. Both are fine and now 18 and 16 years old. Another mum at school who has four DCs had the same thing with all her pregancies; by the third time she was like 'not again'. But all was clear on the tests - so redyellowgreen you have a point.
Good news for the future though, they are developing a test that doesn't involve the invasive stuff, when we were at UCH we gave our bloods to the study that is developing the new tests.

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