Waiting for amnio results - so down :(

(69 Posts)
Marma1ad3 Fri 10-Jan-14 16:46:40

Hi, this is my first post here but I want to just offload a bit before I go more mad than I feel already.

My quad test gave us a 1:5 heart stopping ratio for a genetic problem (not sure about the specifics, I haven't seen any actual data). I got this on Monday afternoon. I was squeezed into a clinic on Tuesday lunchtime for my amnio which was brilliant but the wait since has been horrid.

I just called the fetal medicine team at the hospital and they said probably no results until Monday now. I don't know what the hell I'm going to do with myself all weekend sad I have a 2 year old and I just want o hide, which isn't fair on her.

I'm so scared of the results, we know what we want to do either way but we just need to know now.

Anyone got any advice for distraction? It's already been the longest week of my life sad

Monten Fri 10-Jan-14 19:49:53

Hi Marma1ad3

So sorry you're going through this. I know what its like, I had a CVS on Tuesday and was really hoping for the results today but no luck.

The waiting is terrible. I was so resigned to the fact it was going to be awful news (if you look at the other thread you will see I had a lot of bad results) that I almost felt quite calm. Today I've been stupidly getting my hopes up that maybe the news will be good - I fear I am just setting myself up.

Anyway - 1 in 5 means 80% chance that everything is absolutely fine. Hold on to that thought. And at the end of the day, its just numbers.

No advice for distraction unfortunately - I can't concentrate on a single thing. Just be nice to yourself

stinkypants Fri 10-Jan-14 19:52:28

Really feel for you. The only thing I can suggest is to keep as busy as you possibly can and have chatty people around who will drown the silence. I remember waiting 2 weeks to know if I had miscarried, several years ago now. I was beside myself. Knew it was highly likely though (and was devasting when finally confirmed but now have 2 dc and 3rd on way so the time and joyful things that followed have helped that part fade away).
I would keep the statistic in my mind and remember that, if I'm reading it right, that's 80% in your favour.
xxx

lljkk Fri 10-Jan-14 19:57:50

Sorry, no advice for distraction. sad

Marma1ad3 Fri 10-Jan-14 20:25:51

Monten I'm sorry you are in the same position too sad utterly crap isn't it

AnyCrunchyCarrotFucker Fri 10-Jan-14 20:37:36

I have been there and to be honest pretty much blocked that whole time out of my memory. Sorry you are going through this.

However, my amino came back clear after a stonkingly bad 1:3, so it can and does happen that it is just 'one of those things' and on the odds there is an 80% chance all is fine.

Good luck and fingers crossed for you x

grobagsforever Fri 10-Jan-14 23:21:23

So sorry you are gping through this. I just went through it at Xmas with 1/15 odds of downs, waited 5 days for all clear. I read a lot, trashy novel s yo help me escape. The odds are still in your favour. Did you also have nuchal screen? Bloods alone aren't very reliable.

Marma1ad3 Sat 11-Jan-14 17:03:10

Urgh I'm not sure today could go much slower.

lljkk Sat 11-Jan-14 19:17:41

What do you have planned for tomorrow?

SaggyOldClothCatPuss Sat 11-Jan-14 19:40:22

<<Hand holding all round.>>
I went through this a few months ago. It's HELL. All I can suggest is just do whatever you can to get through. I stayed home, wallowed in bed and watched black and white films. I spent a lot of time sobbing and a lot of time googling stuff that anyone in this position should NEVER google.
In really hope that you all get the results that you need.
Whatever happens, in a couple of months, this will all be a distant memory that you have lived through, dealt with and filed away in your mind under 'total shit times of my life'.
Fingers crossed all round. xx

Jacksmania Sat 11-Jan-14 19:57:33

Just want to offer my support and send you massive (((((*HUGS*)))))). We had a false positive quad screen when I was pregnant with DS, amnio the next day, and the waiting was horrible. The hours just dragged while DH and I sat on the couch staring holes in the wall.
Are there any jobs need doing in your house that you could do and get done? Anything you've been putting off?

<offers hand to hold until results are available>

grobagsforever Sun 12-Jan-14 09:07:44

How are you today OP?

Marma1ad3 Sun 12-Jan-14 09:15:32

Hiya, I actually got some sleep last night which is a start I guess although I already have butterflies in my tum about tomorrow sad

Going to take my LO to the park to feed the ducks today, get some fresh air. She's really annoying atm and I know it's because she feels/is aware something is up with mum and dad but I could do without it.

My bump has been really achey and sore the last 24 hours too and I could do without the reminder of being pregnant sad

lljkk Sun 12-Jan-14 11:52:07

I want so much to say the right thing that will help you get thru this, but runs risk of being insensitive & trivialising if not the perfect thing you need to hear (sorry).

Just hang in there. It is only 48 more hours before you'll have some certainty.

Marma1ad3 Sun 12-Jan-14 17:56:12

Bugger, the rising panic is starting already sad I feel sick and short of breath sad I'm so frightened and anxious.

At the same time I need to know and don't want to know.

I want to say thank you to those who have posted, it means a lot. I've read lots of other threads with people in a similar position but I don't see many positive outcomes for such high odds sad I don't know what I'm dreading more, learning the results or telling people.

For very personal reasons we won't be going through with the pregnancy if it is a positive result (and another thank you for being able to post that here without fear of saying the wrong thing). I've already been in touch with ARC and will contact them again.

What do I tell my mum sad

Jacksmania Sun 12-Jan-14 18:13:23

Would your mum not be understanding of your decision? Have you told her about the quad screen? If you haven't, and if she wouldn't be supportive, then could you just tell her, or find words to suggest that you miscarried? Or had what's called a missed miscarriage? If you've already told other people about your pregnancy, that could be the way forward. Your decision is no-one else's business, and you need no-one's judgment to make this difficult time even harder.

Marma1ad3 Sun 12-Jan-14 18:25:01

Thanks. No I don't think she would be supportive, she is quite religious (I'm very much not) and is quite judgemental too. I love her but I don't think she would understand. It feels shit for me to have to lie though, it's another thing that I will make sure my DD won't feel she has to lie to me that's for sure.

I think for work we are just going to say we lost the baby and leave it there, I'm not friends with anyone enough to say any more. They know I'm pregnant

Fucking hell this is so awful sad I wish I could get drunk tonight even!

Jacksmania Sun 12-Jan-14 18:35:17

Oh sad - and if you ever needed a mum's support, now would be the time, wouldn't it. I am so sorry sad
Best just to tell her you had a MMC then, I think?

What about friends? Have you got anyone around you whom you'd feel comfortable telling? It's such a hot potato topic sad

It really is awful.

(((((((*HUG*)))))))

SaggyOldClothCatPuss Sun 12-Jan-14 18:47:45

{{{{hug}}}}
It won't be long now. We are all here.
What are you doing tomorrow? Can I suggest staying near home? I waited in all day on results day, then had to go out in the late afternoon. I'd just got where I was going, about 10 miles from home and the call came in. I have no idea how I got home. sad
Don't give up hope yet. I know you find a lot of negative stuff online, but remember that people only post for support to deal with the shit stuff.
1 in 5 is still 4 positive stories for every 1 negative.
As for your mother, I had the same issue with some of my family. What worried me more than almost anything was knowing that I would be judged for terminating. I decided, if it was necessary then I would swear DP to secrecy and then tell everyone we had lost her.
Thankfully, hmm it never became an issue, because it would have been a burden to carry, but I would have done it. It's just a shame that it even might have come to that. sad
Im not religious, so I won't say I'm praying for you, but I sincerely hope that this time tomorrow you are happy and relieved and settling down to enjoy rest of your pregnancy. xx

Jacksmania Sun 12-Jan-14 18:56:52

((((((*Saggy*)))))) sad

SaggyOldClothCatPuss Sun 12-Jan-14 19:36:00

I'm ok. smile Everything is good. smile

Marma1ad3 Sun 12-Jan-14 19:59:04

Thanks saggy, that is really helpful of you. Yes I think a big conversation (ha! I mean ANOTHER big conversation) with my OH looms about what we say and to who. I have told my 2 best friends, one would do the same, one wouldn't neither judge me at all. Why can't family be the same sad

Jacksmania Sun 12-Jan-14 20:15:59

Well, friends are the family you choose, right? smile

Do you think your OH will have different ideas to you, as to what to say?

ImASecretTwigletNibbler Sun 12-Jan-14 20:19:53

Will you get the results by letter or phone? If it's by letter then ask to pick it up direct from the hospital rather than waiting for the post. I did this with some scary results I was waiting for recently and it cut out a day or two...

stickysausages Sun 12-Jan-14 20:24:32

So sorry you're going through this sad

Hope you get the result soon, and its good news.

If you get bad news, I agree that suggesting a miscarriage would be best, terrible your mum wouldn't be supportive though!

Thinking of you and your husband x

Marma1ad3 Sun 12-Jan-14 20:27:17

No they will call me and if I haven't heard by 3 I'm going to ring the and I don't care if they are as unhelpful as the woman was I spoke to on Friday.

My OH is great at times like this, and will help me with his family and what to say. It's my mum that I'm worried about sad

SaggyOldClothCatPuss Sun 12-Jan-14 20:38:27

I was told that results didn't come in until the afternoon and was given the impression that they get the bad news out of the way first. I reckon if you don't hear by 3 then everything is ok.

Marma1ad3 Sun 12-Jan-14 20:45:34

The nice woman on Thursday said that results come through from 11am normally so not to panic first thing.

grobagsforever Sun 12-Jan-14 21:05:53

I got my cvs results from st Georges through about 11.30. Thinking of you OP. It was me just two weeks ago and I'm still feeling fragile, despite good news.

CrispyFB Mon 13-Jan-14 00:32:15

I had a 1 in 5 at my NT this time round and baby has typical chromosomes. I've heard the quad screen is far more likely to give false positives too.

Hoping you get the result you want tomorrow and that you can get some sleep tonight. I know what the stress of waiting for results is like, believe me!

grobagsforever Mon 13-Jan-14 08:37:43

Good luck today OP. At least the waiting is nearly over.

Marma1ad3 Mon 13-Jan-14 09:03:47

Thanks grobags, I feel dreadful. I am so frightened of the phone ringing sad

ThisIsMeNow Mon 13-Jan-14 09:14:52

I had an amnio with dd and the wait was the hardest but you're so close now. Hand to hold if you need it thanks

GampyWabbit Mon 13-Jan-14 09:22:17

Good luck for today xxx

grobagsforever Mon 13-Jan-14 09:36:33

I know what you mean about phone ringing - I practically had a heart attack when mine rang and it wasn't even the hospital it was my bloody mother!! Not long now - hang in there. Funnily enough I was talking to a friend this morning who'd had a 1/13 risk - she was a similar age to you. Her daughter is perfect. This agony is so common.

CrispyFB Mon 13-Jan-14 10:02:10

I got the phonecall at 9pm at night when I did a late amnio with DC3 (we waited it out to 32 weeks when it's "safe" as I wasn't keen on invasive testing for 1 in 34). I thought they'd have gone home for the day so I had relaxed a bit and was totally unprepared! But the nurse said she didn't want anyone waiting any longer than they had to, bless them smile

Hope you don't have to wait much longer!

SaggyOldClothCatPuss Mon 13-Jan-14 10:43:48

The morning i was waiting for my results, I got THREE 'private number' phone calls. All from sales people. [Confused]
BOY did they get the shock of their lives! Not one has called back since! grin

Marma1ad3 Mon 13-Jan-14 10:49:56

Not heard anything yet sad

stickysausages Mon 13-Jan-14 10:56:07

Thinking of you OP thanks

lljkk Mon 13-Jan-14 11:02:24

Hang in there. flowers

Monten Mon 13-Jan-14 11:08:57

Hi Marma1as3 - thinking of you today. I'm really hoping my results come through today too although they said up to 5 working days which would be tomorrow.

It's just unbearable - I really feel for you.

Are you at work? I couldn't face it today.

Dillydollydaydream Mon 13-Jan-14 11:09:42

Thinking of you.

SaggyOldClothCatPuss Mon 13-Jan-14 11:11:48

Adding Monten to the hand holding list. Xx

Marma1ad3 Mon 13-Jan-14 11:12:24

No not in work, haven't been since the amnio. Can't stop crying sad

Marma1ad3 Mon 13-Jan-14 11:16:10

No not in work, haven't been since the amnio. Can't stop crying sad

SaggyOldClothCatPuss Mon 13-Jan-14 11:17:51

Lovey, its ok to cry. {{{hug}}} This is a shit day, but remember that it's just one day and it'll soon be over. The fear of the unknown is the worst part. Just stay strong. x

shoeprincess2 Mon 13-Jan-14 11:21:10

Just read your post- I was you in March 2012. Got a 1 in 5 risk of a chromosomal problem, due to a high nuchal fold measurement (4.1mm). Had to wait a fortnight to have the amnio and then had the dreaded 2-3 day wait for telephone results. I had a permanent headache and then got the call at work. All was fine. I know exactly how you are feeling. Lots of googling and thinking "what if" and lots of crying. Remember 1 in 5 risk of something being amiss, means 4 in 5 of all being fine. Take care x

JugglingBackwardsAndForwards Mon 13-Jan-14 11:25:07

Thinking of you x

muppetthecow Mon 13-Jan-14 11:30:15

This was us three years ago. It was possibly the worst week of my life. I just felt so out of control. I think whichever way the results go it gets that bit easier because you know and can act on it. That limbo will be over soon. {{hug}}

Jacksmania Mon 13-Jan-14 15:03:17

Another hand to hold. ((((((*HUG*))))))))

Marma1ad3 Mon 13-Jan-14 15:18:48

It came back positive for t21 sad

I feel better for knowing, but destroyed at the same time

JugglingBackwardsAndForwards Mon 13-Jan-14 15:23:32

Oh, I am sorry Marma sad

WipsGlitter Mon 13-Jan-14 15:27:06

I'm sad to hear you didn't get the result you wanted. I have a son with Downs and I can understand your fears and feelings at the news. Big hug. xx

SaggyOldClothCatPuss Mon 13-Jan-14 15:35:24

I'm so sorry. I know first hand what you must be feeling right now. sad
I know you've made your choices, and ill not judge you for them, its a very personal decision, But take a few days to clear your head. And in terms of your mother, work out what you are going to do on advance. It might be better to tell everyone the same thing.
Anyway, have a {{{{hug}}}} and know we are still here. x

Hanzym Mon 13-Jan-14 15:45:04

I'm so sorry for you, I know how you must be feeling, I had to have a termination due to a condition not compatible with life, I was 18+4 and delivered him on Saturday, it's heart breaking and nothing can make you feel better, I just found looking on here helped me know I'm not the only one, good luck with the next process and if you want to talk please feel free to e-mail me xxx

MrsT2007 Mon 13-Jan-14 15:55:44

Oh I'm so sorry it's not good news.

I've been exactly where you are now, and I promise it gets better xxx

Good luck, whatever you decide xxx

muppetthecow Mon 13-Jan-14 16:00:11

I'm so sorry to hear that Marma sad

I second what Saggy says about taking some time to think. Even though you've made your choice, you still need a few days to come to terms with it. Try not to put pressure on yourself to tell people quickly; it's your news, they need to hear it on your timetable. x

snapple21 Mon 13-Jan-14 16:13:28

I'm really sorry to hear this.

I had a termination of my much loved baby due to a downs diagnosis last year feel free to pm me if this is the route you choose xxx

Monten Mon 13-Jan-14 16:55:09

Hi Marma - I'm so so sorry. You must be devastated.

I have also had bad news, but will post about that on my thread.

I'm so sorry. It's terrible, shitty, unbelievably awful luck.

stickysausages Mon 13-Jan-14 17:00:39

I'm really sorry sad

grobagsforever Mon 13-Jan-14 17:07:58

I'm so sorry. Do take your time and do things on your terms.

teenybash7 Mon 13-Jan-14 18:23:03

I'm so sorry. I had a termination at 23 weeks for a condition incompatible with life. It still hurts many years later but I remember the utter devastation and the shock after the amnio. Be kind to yourselves.

CrispyFB Mon 13-Jan-14 18:42:36

I am really sorry you did not get the result you wanted and for the situation you now find yourself in. Even though it was 1 in 5, you've still been very unlucky as the odds were in your favour.

Very much thinking of you and all you have to deal with in the immediate and near future sad

lunar1 Mon 13-Jan-14 18:47:39

I'm so sorry you news wasn't good. I hope you have lots if real life support.

Jacksmania Mon 13-Jan-14 19:58:56

Oh sad
I'm so sad for you sad

Tranquilitybaby Mon 13-Jan-14 23:50:29

So sorry to hear that :0( love and light to you x

Jacksmania Tue 14-Jan-14 02:47:34

Thinking of you. Keep posting if it'll help you get your head around everything, no-one will judge you, and there are lots of us here to hold your hand.

realnappiesmum Tue 14-Jan-14 10:14:14

We had diagnosis of Down's Syndrome at 21 weeks. We continued with pregnancy and our little princess is absolutely fantastic. She is the apple of her brotber's eye,absolutely adore each other. There is a website called Future Of Downs which is great and attached Facebook group which is fantastic. Run by parents of children with DS. The support and knowledge on there is 2nd to none.

JugglingBackwardsAndForwards Wed 15-Jan-14 19:13:37

How are you Marma? I'm so sorry sad

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