Has anyone had a good cvs outcome after a 1:2 risk from combined test?

(28 Posts)

I'm pretty sure I'm clutching at straws here as all the signs were bad from my combined test (bad blood results, nasal bone absent, tricuspid regurgitation) resulting in a 1:2 score. But I'd be interested to know others' outcomes. I'll probably be having cvs tomorrow but am bracing myself for the worst. I know it's a personal choice and others would disagree but we already know what decision we would make if it's not good news.
Anyone with happy tales out there?

Yaya70 Tue 08-Jan-13 15:14:35

I wasn't sure whether to post as it wasn't good news for me, but I've definitely read of people on mumsnet with similar odds having a good outcome. Hopefully they will be along soon to give you some hope.

I had the exact same results to you -- bad bloods, no nasal bone, and tricuspid regurgitation. It's 50-50 and luck wasn't on my side. But perhaps you will be the lucky one this time.

Best of luck for the CVS tomorrow. xx

Thanks Yaya, I hope it wasn't too traumatic for you when you went through this. thanks I've spent most of today on the Internet and ringing round (midwife, GP, hospital, ARC) to find out a bit more about what all the bits of my risk score mean, my realistic chances of a happy outcome, and next steps if no happy outcome. It's been a bit of a traumatic day but I think I'm starting to get my head around it all. My baby also had an absent ductus venosus which is an added complication in it's heart so I just can't see me or the baby being 'the lucky one' sad Have provisionally booked in for a surgical termination next weds pending the outcome of my CVS. Just really need resolution one way or the other as this waiting game is no fun at all.

RufousBartleby Tue 08-Jan-13 19:28:34

Message withdrawn at poster's request.

Thank you Rufous, that's what I was thinking myself about the other 50% not being a good outcome either. I did ask if I could go straight for a termination but no-one I've spoken to at private clinics / midwives / hospital have said they would recommend that. Some of them were quite forceful about it. It does feel like going through the motions for the CVS but I think I can probably cope with a week's wait for the termination. Do you mind me asking whether you went for the surgical option or medical? And how do you feel a week on, both physically & emotionally? I'd like to have something positive in the future to focus on to help me get through the next week.

ghislaine Tue 08-Jan-13 22:00:39

Hi Yikes, there are stories on here of people getting a clear cvs after a 1:2 result, but I'm very sorry to say I think it's unlikely with the indicators you have. I had a very similar result - tricuspid regurgitation, reverse flow through the ductus venosus, high HCG and low PAPP-A (nasal bone was present and the nuchal fold was normal though) and my baby did have Down syndrome. When I was doing my obsessive reading in the waiting period I came across the statistic that something like 97% of babies with a reverse flow in the ductus venosus have a chromosomal abnormality, the other 3% are chromosomally normal. I know that's not a good thing to read.

I had a surgical termination at 14+1 which I understand is close to the limit for STOP. This delay was partially because the midwife who called the day after I had the results then told me I would have to wait a further two weeks for the full karyotype to rule out mosaicism in the cvs sample. She rang me back the next day to apologise, said she should never had said that to me, and to say she'd been overruled by the consultant.

The waiting is one of the worst bits of the whole process, I really feel for you.

RufousBartleby Tue 08-Jan-13 23:22:07

Message withdrawn at poster's request.

Thank you ghislaine, Rufous and Yaya for letting me hear your experiences. It's all very sad isn't it, but it means a lot to me to hear from people who have found themselves in a similar position to me and that you're getting through it ok. Lots of love to you all.

FindingItTricky Fri 11-Jan-13 14:55:33

Hello, we had a 1:2 combined test result with a massive nuchal fold measurement, although the nasal bone was present (not sure about the other indicators). The CVS was positive for Downs and, thinking about the interests of our healthy DS and the family as a whole, we took the same devastating decision that you are facing. It was heartbreaking. I found the actual termination very difficult emotionally (although not physically) and I did struggle with it for a while after but I just wanted to post to let you know that time moves things on and after a while I came to terms with what had happened (in fact with help from kind words and support here). Soon after that, our DD was conceived who is now 4 months old, healthy and beautiful and DS adores her smile I do think about the lost baby and what she might have been like quite often, particularly now we have DD, but I am content that we took the right decisions for the right reasons for our family. HTH [supportive face and a big hug emoticon]

RufousBartleby Fri 11-Jan-13 20:07:28

Nice post FindingItTricky. It is nearly two weeks since my termination, and your words have given me some hope too.

FindingItTricky Fri 11-Jan-13 21:42:37

If its helpful, this is the thread I started when I was struggling with having terminated. I got so many hugely supportive and helpful replies which really helped me to move past the guilt and accept what had happened as devastating but the right choice for us. But just a warning that I was very frank about the overwhelming guilt I was feeling, so don't read it if you don't need that sort of stuff in your head at the moment. www.mumsnet.com/Talk/antenatal_tests_choices/a1332296-Honest-difficult-feelings-about-terminating
Sending you all thoughts of strength and courage and that you too have much happier times in the future.

Thank you Tricky - so lovely to hear that you got pregnant again so soon and have a lovely DD. I will have a look at your other thread now.

thanks Tricky

oceanoftears Sat 12-Jan-13 21:45:04

Hi Yikes, I had the similar result from combined test 1:2 score and got my CVS test result positive for DS last week. I really hope that you do not get the same result, there are few people who got negative results even after 1:2 score. Best of luck

Oh no ocean, it's shocking news isn't it? Hope you're feeling ok about it and have support for whatever decision you make re next steps. thanks
I ended up not having the CVS on Wednesday as the consultant advised me to wait for the results of my harmony blood test before any invasive tests. I was hoping to hear back on Friday but didn't. So still playing the waiting game. Likely to hear back by next Wednesday and then dependent on the result will need to think about a CVS at that stage. Time's ticking on though and I'll be 13 weeks on Tuesday.

sheisold Mon 14-Jan-13 22:18:49

just seen this and although no words of wisdom or advice just wanted to vitrually hold hands. Vey hard - terrible decisions for us to make - i am considering tests and feel like i need someone to tell me whats right. But nothing is right or wrong and no one can help. Lots of love at this time x

blondecat Tue 15-Jan-13 18:55:49

It must be so stressful for you. It's not good news
But unless the medical profession is taking the mickey you ought to have a 50% chance of a positive outcome. Let's say the odds are not exact, then maybe 40% minimum.

After you get the harmony results do you still need the CVS? I hears they are pretty accurate
Let's hope for the best

RufousBartleby Thu 17-Jan-13 20:02:57

Yikes Please come back and say how you've got on. Have been haunting this thread in case you have any news smile

A quick update: harmony results on Monday came back 'high risk' for Trisomy 21. Then CVS result yesterday confirmed it. sad
Booked in for termination on Monday. Very scared but thank you for all your support. flowers

RufousBartleby Sat 19-Jan-13 14:52:29

Message withdrawn at poster's request.

Thank you Rufous - I will hold on to the thought that there's nothing to be terrified of. I'm glad to hear you're feeling so positive already. Best of luck for the future. xx

ghislaine Sun 20-Jan-13 20:51:25

So sorry to hear your fears were confirmed. The days to come will be quite rough, although I did find a certain sort of sense of relief when the waiting came to an end. I will say though that 2 1/2 years later I still have some bad moments - what I'm trying to say is that the recovery process won't be all straightforward, there'll be good days and bad days and eventually more good than bad, but you might have a bad day (or moment) when you least expect it.

Elderflowergranita Mon 21-Jan-13 01:24:25

Don't be scared yikes. Am so sorry you're going through this.

Ultimately it will all be fine. Reach out for all the support you can get, both here and in Rl.

Your hormones may leave you in a bit of a maelstrom over the next few days, so just let yourself cry when you need to cry.

You are doing what is absolutely right for you, as painful and heartbreaking as that is.

There are much better days ahead. xx

Thank you elderflower and ghislaine. The op went well yesterday; no complications thankfully and I don't remember a thing about it, not even the general anaesthetic that I was dreading. Just got to rest now and forget about babies for a while before trying again in a few months. Love to you all and thank you for posting. smile

RufousBartleby Tue 22-Jan-13 20:53:00

Good to know you got through it okay Yikes. Go easy on yourself for the next few weeks though. I found that I powered through the first few days and then my hormones 'crashed' after about 5 days and the emotion was quite overwhelming. Hope you have lots of love and support around you in RL and if you can forget about having babies for a couple of months you are definitely a stronger person than me smile

FindingItTricky Fri 25-Jan-13 23:47:17

Oh Yikes I am so so sorry to read your news sad I agree with Rufous, be gentle with yourself and give yourself time to heal. Lots of support on here if you need it down the line. Sending you hugs and understanding.

SomeDaySoon74 Sun 03-Feb-13 08:38:02

Hello. Yikes here (with a more sober post-TMFR name change). Just wanted to pop on and say thank you to Rufous and others for warning me about the hormone crash. Day 5 came and went relatively easily but then on day 10 I spent most of the day in tears, at work and at home. Totally fell out with my boss about something extremely trivial, which I can only put down to hormones. At least the next day I could look back and think, ahh, so that's what they all meant! Thank you all again for your support at a very dark time in my life. So relieved I'm coming out the other end still sane.

zombielady Fri 12-Jul-13 18:13:55

just wanted to post a good news story for anyone reading. i had odds of 1 in 2 for downs. Luckily results were negative. Heart scan fine, no other problems now 32 weeks pregnant. Apparently another lady at same hospital had same odds that week and she was fine too. so sorry for those who got bad news.

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