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NIPT 9/10 for t21, scan looked bad, CVS confirmed it today. Thanks for all these threads

(14 Posts)
hadtomakeanawfuldecision Mon 16-Jan-17 11:48:05

namechanged for this. I live abroad so some of the ways things are done here are different to the UK.

I've had a really horrible week. Called on Tuesday by ObGyn's office to say that Panorama test had delivered bad news, had to wait 90 minutes before they would email over the results to show what the bad news was.
Had an appointment the next day with a specialist who showed us all the fluid sloshing around the baby's nuchal area. He did my CVS on Friday, and I rested all weekend to prevent m/c even tho' I knew I'd probably be terminating the pregnancy anyway.
I have always been very clear from family and friend's experience of Downs Syndrome that I would not be able to cope and would not ask my children to cope with something that I find hard. Still awful to see the beautiful baby on the scanner. I'll have to deal with that guilt for ever.
Today is Monday and they confirmed t21. So I have to go for a compulsory counselling session tomorrow and then wait 48 hours and pray that I am still in time for a surgical termination.
But I just wanted to say that I am so grateful to all of you posting your personal stories and experience. I felt much more informed and prepared, as much as I could be.
kittyandteal I really am thankful that you have shared your awful experiences, it was so kind of you.
I am dreading Thursday when I should have my termination. I felt so pleased to have got to 12 weeks without miscarrying.
I am very very lucky to have two healthy children already and I was resigned to only having them. This pregnancy came out of the blue and I dont think I am strong enough to risk trying again-would be 39 by the time a possible baby was born.
I've booked in for counselling from Friday onwards. Figure if I can howl at someone twice weekly I'm less likely to end up sobbing in the gym/shopping mall.
I wish all of you the very best of luck and thank you so very very much. It is a dreadful club to be a part of but I feel I've learnt a fair bit about myself even over this awful week.

vickifaith Mon 16-Jan-17 12:33:10

So sorry to hear your sad news. I'll be thinking of you this week xxxx

mm81 Mon 16-Jan-17 18:55:44

I just need to ... I really don't know what to think/feel I am upset.
Had a call from hospital today to say 1 in16 chance of Ds. Scan was last Sunday.
Iam 35, 13+2 and it's our first. I am going in tomorrow for blood test I think it's what I might do. It costs 270 quid and 5 days for results... I don't care about the cost I just need an answer. But I am just so overwhelmed I really am... 😰

user1483719818 Tue 17-Jan-17 13:54:53

I had the same thing mm81 and it was 1 in 7. I am waiting for NIPT results as we speak. Its been v.overwhelming and floored me tbh. But I feel stronger for being brave enough to find out properly. Whatever happens, i'm rooting for you. flowers

mm81 Tue 17-Jan-17 14:57:16

Hi thanks for your words. I am feeling the same now.
I had it this morning now just wait for results next Wednesday. Fingers crossed for both of us xxx

BlytheOfWindyWillows Tue 17-Jan-17 15:26:48

Hadto, i'm sorry to hear you news. I had a CVS scan yesterday as I was 1 in 5 for T21. The FMU have just called with the results and I got the all clear. Fingers crossed for mm81 and user

KittyandTeal Wed 18-Jan-17 14:33:09

Hi all, I'm so sorry you are all suffering bad news or that awful waiting time.

Hadto counselling is a great idea, I couldn't have got through my first loss without having someone to speak to. Can I suggest sands and arc. I know you are outside the uk but they both have forums that I have found very helpful.

Those of you still waiting please think about giving arc a call, they are brilliant to have someone to talk to who understands and knows all the technical jargon that you have to explain to others.

Good luck to those of you waiting for results. Hadto be kind to yourself and take one day at a time, loosing a baby can floor you let alone having to choose a termination.

Robinredface Wed 18-Jan-17 14:43:41

I'm so sorry for those of you that are having to go though this.

I had a 1/6 chance and nipt and cvs confirmed in November that our baby had T21. It's an awful thing to go through and I opted to terminate. As you say, the guilt is horrendous.

I've also had a missed miscarriage in the past and so felt happy that I'd got to 12 weeks and hadn't miscarried. The downs diagnosis knocks you for 6. Counselling is a good idea, but I want to let you know that the pain lessens and time helps. It's only been two months for me but my head is in a better place.

Also, strange as it sounds, the waiting is the worst bit. I waited 5 days for the nipt results and I went out of my mind. Having an answer (even though it wasn't the one we hoped for) was a relief in a way.

mm81 Wed 25-Jan-17 18:39:34

I was meant to have harmony results back today. As I heard nothing by midday I phoned the hospital only to be told that lab had an issue with one of the machine as it broke down so are only working with one machine and trying to clear back log.
Had I not phoned they wouldn't have bothered to let me know. I paid £275 for this and service is appalling not mentioning how stressed we had been waiting for the results.
I am tempted to complain to them!
So now we have to wait to Friday afternoon for results and it will be last thing 4.30 pm onwards.....
Iam speeches and pissed off!

hadtomakeanawfuldecision Thu 26-Jan-17 00:35:38

Thank you for your messages- managed to lock myself out of this account for a while, hence radio silence.
I have to say I was fine for a week- almost enjoyed not feeling morning sickness and being exhausted- and then last night it just hit me very hard that there is no baby. Cue lots of snotty sobbing and wailing in the shower once kids were in bed and before my husband got home.
Not many people knew I was pregnant and I have only told three friends that it was a tfmr rather than a miscarriage- I am v pro-choice but did not feel I had the strength to debate the morality of abortion at the moment. So I have been putting on a jolly face and trying to suck in my stomach and wearing the compressor bras whilst looking at my poor empty belly and trying to fill it with junk. Ugh.
Awful. I decided to give myself a couple of weeks before I see the counsellor but I think I'll contact ARC in the meantime. I want to talk about risk levels for illnesse should we ever decide to try again and be lucky enough to conceive.
Thanks so much robin for your message and vicki too.
Congratulations blythe- wishing you an utterly uneventful and boring pregnancy hereon in. And good luck mm81.

Gurraun Thu 26-Jan-17 18:45:24

I am so sorry. Unfortunately what you have written turned into my life today. High risk for T21 on NIPT. Cvs on Monday and no doubt tmfr. I have 2 lovely boys already and it would change their lives too much. Feel absolutely devastated and awful as you do. And I can't face it again so no more TTC but hard to count my blessings today. All the best

primaryboodle Thu 26-Jan-17 18:54:45

Im so sorry for your loss flowers my first baby ended in a tfmr and it was utterly awful. Its coming up to what would be her first birthday. I found ARC forums utterly helpful in helping me through my emotions early on, its a long process but youre not alone

mm81 Fri 27-Jan-17 11:09:36

Results back today.
Low risk ... sooooo relieved
I can move on with my life!

user1483719818 Fri 27-Jan-17 11:49:51

So pleased for you mm81. The waiting is awful. Enjoy your pregnancysmile

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