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Original poster

1 in 7 result after nuchal fold and blood test - am really worried

44 replies

Stewierocks · 16/05/2015 08:31

Hi,

We went for our 12 weeks scan yesterday. I'm 42 and have one daughter and have had one miscarriage so I'd already worked myself up to think things weren't going to be OK. Was so relieved when we saw the baby jumping about and seemingly healthy. But then after waiting for an hour, they brought us back in to say the combined nuchal fold and blood test showed a 1 in 7 chance of Downs Syndrome. So I then had the amniocentesis- results mid next week. Although they weren't sure if they got enough of the placenta so might have to repeat it - they'll let me know on Monday. I am so so worried and freaking out - just wondered if others had had this experience and any advice. I know what will be will be, and we've already talked and agreed what we will do if the outcome is positive. But I've wanted another baby for ages and for all sorts of reasons it's been really hard so am so gutted about this. :( Thanks

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Original poster

Stewierocks · 16/05/2015 09:04

It was the CVS I had not amnio - getting muddled!

OP posts:

TheoriginalLEM · 16/05/2015 09:09

No experience but 1 in 7, although high odds still means it is 7 times more unlikely that your baby has Downs syndrome. Hold on to that for now, its good you have been able to make a decision before you get the actual result

Springtimemama · 16/05/2015 09:10

This reply has been deleted

Message withdrawn at poster's request.

Springtimemama · 16/05/2015 09:11

This reply has been deleted

Message withdrawn at poster's request.

FlightofFancy · 16/05/2015 10:28

so sorry to hear you're going through this. did they explain whether there was anything in particular that contributed to high risk, eg nuchal fold very high or bloods? remember, there's still a chance all will be ok (I had a 1 in 9 risk and cvs plus more detailed screen were completely clear). Have fingers tightly crossed for you x

UpNorthAgain · 16/05/2015 19:55

Hello OP. I'm very sorry to hear this and fully understand how awful the waiting is. I had an amnio when expecting DD (nuchal fold testing wasn't offered in the late 90s) and well remember how stressful the whole situation is. I felt like bursting into tears the whole time (9 days?) I was waiting for the results, and as DH was a supra-logical scientist he was worse than useless. He just kept saying, "There's no point in worrying or talking about it, it won't affect the result." Aagghh!

I can't offer anything but sympathy and virtual but I didn't want to read and run. DD was fine, BTW.

KittyandTeal · 16/05/2015 20:03

I have no experience of ds but we did have similar (at our 20 week scan) with trisomy 18.

The waiting is awful but hopefully they should be able to give you results for T13, T18 and T21 in a few days (although I'm guessing on blood work that they probably aren't worried about 13 or 18)

Have you heard of arc? They are a wonderful charity to support couples with antenatal results and choices. They have a fantastic helpline and you can talk to ladies who have been in your situation.

They've been a lifeline for me.

It is very, very hard and a real shock. I do know how you feel. T21 is compatible with life in lots of cases so you do have options.

Spend some time doing research, talk to people (like arc), cry and mourn if you need to and prepare to make a decision. I know that sounds awful and hopefully you won't have to but prepare yourself in case you do.

My dh and I had already decided with our first dd what we would do in the case of an incompatible with life diagnosis, we had also decided (roughly, you never know straight off in T21 cases what the issues will be) what we would do if we ever got a diagnosis of Down's syndrome. We never thought we'd actually have to make that decision but I'm glad we'd had the conversation before our results.

The flip side is that in a few days you get a call saying all is fine and you can celebrate. I really hope that's the case.

KittyandTeal · 16/05/2015 20:05

Btw there are a lot of friendly faces with experience over on the antenatal tests board.

dande0609 · 16/05/2015 20:12

There is also a charity called arc (antenatal results and choices) they were a huge support to me when I was given a 1:10 result. I hope your results come through quickly, I know how awful the waiting is, good luck.

Original poster

Stewierocks · 16/05/2015 21:07

Thanks so much for all your support - it really means alot. I will definitely look into ARC. Just keep looking at the pictures from the scan against those of my daughter - stupid really - trying to see if there's anything different. All I can see is an amazing looking baby. We already know what our decision will be and we have no doubts about it, but it still will be so very difficult and emotional. I am prepared as much as one could ever be but am just hoping that we won't have to go down that road. My tummy is still sore from the procedure and I feel exhausted - it just means to get support from people who understand what this is like. Thanks. I'm going to go and watch Pitch Perfect now for some light relief from my own head!

OP posts:

carbolicsoaprocked · 16/05/2015 22:15

Hi, so sorry you are in this position. I don't know what your decision is - it's obviously up to you but if you decide to keep the baby in the event of a positive test you may want to look at this Facebook page -Ollie and Cameron - about twins with DS, it is clear how good their quality of life is and made me less scared when I thought our nuchal test was going to come back high. Whatever the result is and whatever your decision, all the best.

carbolicsoaprocked · 16/05/2015 22:15

StAlphonsosPancakeBreakfast · 16/05/2015 22:19

I so sympathise OP - I'm waiting for my CVS results myself (1:20 risk) - so I know how you feel.

Don't forget the background risk factor goes up because of your age, which is the third factor in in risk, so the 'actual' risk may be lower. I'm 40 so I'm trying to bear that in mind too.

scarednoob · 16/05/2015 22:23

Thinking of you. You have done a very hard and brave thing by having the test and i very much hope that you get the results you want. If it helps to hear a positive story, my friend was given 1 in 6 and had the amnio. She now knows it was a false alarm and has a totally accurate answer not just a risk factor.

Try and spoil yourself a bit whilst you are waiting if you can; you might not be able to take your mind off it, but you can look after your body. Big internet hugs.

KittyandTeal · 17/05/2015 07:52

Yes it is exhausting. You are suffering great emotional turmoil and your body is reacting to a pretty invasive procedure.

It's good that you have discussed your decision. I obviously had a tfmr as there was no hope for my baby, Edwards is incompatible with life. Down's syndrome is a bit different. If you would like to ask or chat about my procedure I'd be happy to answer questions. Obviously that might not be the decision you have made and therefore there is not use in you knowing.

Whatever decision you make you will have made it for the right reasons. Don't let anyone yet and tell you otherwise.

wizzler · 17/05/2015 09:01

I would echo what Kitty said.

The waiting is horrible... you just feel as if your world has stopped spinning until you get the results.

Look on the ARC website to get as much info as you can. Monday will be emotional, and it will help you to have a list of questions prepared, whatever the results are

Original poster

Stewierocks · 17/05/2015 09:08

Hi StAlphonsosPancakeBreakfast - I hope all goes well for you too and that the wait is not too long - do let me know. I am 42 so one of the things I am going through is just feeling guilty that my age is affecting all of this. Plus my BMI is 31, so I was classed high risk and was hating myself for not being disciplined enough to diet. I know that doesn't affect the chances of chromosomal abnormality but it's hard not to start thinking about everything you could have done better. As for the decision, it's a very personal choice for everyone and we've made our choice which I am comfortable with and I have researched but thanks for all the links and offers to answer questions, I do appreciate it. So first attempt at taking my mind the worry was Pitch Perfect. It was NOT Bridesmaids, I love Glee but found this a bit disappointing. Today taking my mind off it - Mad Max: The Fury Road! And I did Yoga with Adriene (check her out on Youtube - sorry for the plug but I'm a fan) - yoga for a broken heart which helped too. I ha a big cry yesterday and my 6 year old daughter gave me big hugs which also helped enormously. Kids and family are so so brilliant. Actually feel quite hopeful today. Well wish me luck for MOnday which is when they will let me know if I have to repeat the procedure cos they weren't sure if they got enough for the test!

OP posts:

StAlphonsosPancakeBreakfast · 17/05/2015 17:42

Fingers crossed tight for you Stewie!

And there is just nothing either of us could have done, it really is just one of those things

lardycow · 17/05/2015 17:49

I'm 41 ,nearly 42 and my screening came back at 1:14 risk.
You got your blood results back very quickly. It took 5 days for mine.
I had CVS and like kittyandteal we had discussed what we would do.
Initial result was back within 48 hours and it was normal.

I did cry for those 48 hours though and spoke to arc who were great.

Just had the full culture results back which showed no abnormality so try not to lose hope. As someone else pointed out there is 86% chance it will be ok.

It is only a screening test and not diagnostic. I'm sure they will have enough for the test.

Good luck and be brave.

StAlphonsosPancakeBreakfast · 18/05/2015 08:36

Just got my results back - all clear! I'm going to be thinking of you Stewie and sending all good vibes. Fingers crossed tight.

Original poster

Stewierocks · 18/05/2015 09:36

That's great news - brilliant! Am on tenterhooks waiting for mine, keep checking the phone every10 mins. Hope I hear soon the suspense is awful. X

OP posts:

PixiePuffs · 18/05/2015 09:44

Hi, I had a 1 in 2 chance so was pretty sure it would be trisomy 21 confirmed by the CVS (it was). Like you, we had all ready discussed and agreed our actions before taking the test. I'm not saying it was easy in any respect but it did take the pressure off when the time came to decide. Good luck, I hope you get good news very very soon x

KittyandTeal · 18/05/2015 10:56

Wonderful news! I'm so relieved for you. Rubbish you had to go through the worry and stress and wait so long but what a great outcome.

I hope you can relax a bit and enjoy the rest of your pregnancy x

Original poster

Stewierocks · 19/05/2015 13:28

Still no news. They said 3 to 5 days but each hour feels like a lifetime waiting. This is grim :(

OP posts:

KittyandTeal · 19/05/2015 15:44

Oh stewie, I'm so sorry you're still waiting.

I'm guessing you've called and hassled?

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