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1 in 4 risk...(and trying to take deep breaths)

(8 Posts)
9deepbreaths9 Sun 23-Apr-17 14:36:40

First post. This is absolutely terrifying. I'm posting mostly because I've found it helpful to read about others' accounts.

"No result" from Harmony test (first attempt). Nuchal test on Friday, came up with 1:4 for T21, and 1:6 for T13/T18. CVS scheduled for Monday afternoon. [If anyone is interested in the basis for the 1:4 result: Papp-A and beta HCG both very, very low; NT at what I think is the high end of normal (2.1); and tricuspid regurgitation...on the plus side, baby has weirdly long legs, and nasal bone present, and is otherwise structurally normal.]

Do I need to do anything to prepare for CVS? Do they scan you again before doing the CVS?

OP’s posts: |
Nightfall1983 Sun 23-Apr-17 15:07:29

I refused the CVS so no real advice but just wanted to offer a hand hold and say I remember how terrifying it is. I had 1 in 3 of T21, We did get a result from harmony which confirmed T21 and now have a wonderful 15 month old daughter but those initial few days after diagnosis were so horrid, tears and what-ifs and awfulness. Honestly that was the worst and nothing has ever been as bad. Just wanted to say that and to wish you the best of luck whatever happens and whatever you decide.

GreedyDuck Mon 24-Apr-17 10:01:19

Hi, I am having a CVS today as well, just waiting for the consultant. They are going to scan me first, but they did give me a choice.

I am half hoping either for a miracle, and last weeks scan to have been wrong, or for the baby's heart to have stopped on its own, so that I don't have to make any tough decisions.

It's shit either way.

9deepbreaths9 Tue 25-Apr-17 13:04:05

Thanks Nightfall, that's really lovely of you.

GreedyDuck - I hope yours went ok. Mine was pretty painless and quick; over in a matter of minutes and then, about a half hour later (presumably when the local wore off), so painful I could barely walk. Much better today though.

I completely understand the hoping for a miracle feeling. Now the long wait for (preliminary) results begins, so I'll be hoping alongside you. I've been told I should get a call before Friday afternoon.

OP’s posts: |
GreedyDuck Tue 25-Apr-17 14:05:05

I'm glad they were able to do it. I will hope for a good outcome for you.

Unfortunately they couldn't get a clear shot at the placenta, so I either have to wait three weeks for an amnio, or terminate on what we know so far.

I have a 1 in 3 risk of Edwards. My bloods were awful (0.1 and 0.2 for PappA and BHcg) the detailed scan showed that there are several problems with the baby (all of which can indicate chromosome problems), so I think that we will probably go ahead and end the pregnancy without an amnio. I am devastated and I hope that you have much better news.

9deepbreaths9 Tue 25-Apr-17 15:27:27

Oh Greedy Duck that's really awful, and I feel for you.

My bloods were also terrible (0.18 and 0.39 for Papp--A and BHcG), hence straight to the CVS rather than attempt a re-draw of the Harmony.

I'm told there is a really helpful ARC forum if you have to TFMR: www.arc-uk.org/for-parents/arc-forum

OP’s posts: |
sofato5miles Tue 25-Apr-17 15:35:36

My pregnancy was terrible and the triple test gave us a 1 in 2 result. I had the cvs, was very lucky and now have a healthy 8 year old boy.

While i waited, i rationalised it with even 1:2000 there could still be one.

GreedyDuck Tue 02-May-17 15:23:28

How are you doing 9deep? We went back for our second attempt at CVS today, but the baby had died during the week.

I feel awful, but also slightly relieved that I don't have tommake any more decisions.

Hope you are ok. It's a horrible time.

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