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Original poster

Waiting for Amnio Results

65 replies

LSaraf · 29/03/2021 13:44

Hi,

This is my first post on here but I've been driving myself a little bit crazy with worry the last few days and would be great to hear from anyone who's been in my situation.

I had my first scan a few weeks ago at 13 weeks + 4 days. At the end of the scan the sonographer told us that our NT measurement was 4mm and we were quickly taken to speak to a midwife and booked into the fetal medicine unit the following Monday.

We had another scan at our FMU appointment and the nuchal fold measurement was 3.3mm (but I was now 14 weeks so told that this too late for an NT measurement to be valid). We were given a 1:29 chance of downs syndrome.

We were offered a CVS on the day but they couldn't do it because of positioning so I had to wait two weeks for an amnio. The two weeks of waiting were awful but I managed to distract myself just about.

I had the amnio last Friday which was less scary than expected and have spent the weekend resting. They did another scan and said everything else looks normal but there is still increased fluid behind the neck (4.3mm nuchal oedema). It's been such a tough weekend and I've now convinced myself that we will get bad news. I can't stop thinking about it and crying and have got myself into a bit of a state. We should have our results by Friday though have been warned that the bank holiday may mean waiting until next Tuesday.

I feel like I've given up hope and the waiting is driving me crazy. It would be really lovely to hear from anyone who is in a similar situation or has been through this.

OP posts:
lavenderlou · 29/03/2021 13:56

I had an amnio a few years ago. NT measurement was 3.5mm which combined with blood results and my age pushed me into high risk. The waiting is horrible but there is nothing you can do to change the outcome. There is a charity called ARC which is dedicated to those undergoing antenatal screening and dealing with the results. They have a helpline available for you to talk through your thoughts and anxieties. In my case, the amnio showed that all was well, but I still found it helpful to talk to someone during the process.

As the amnio was a week ago, hopefully you won't have too much longer to wait. Wishing you well.

Mummy2O · 29/03/2021 13:58

Hi. I've been in this situation. My NT was 3.3 (the threshold is 3.5) but my bloods and age increased my risk.

The waiting is absolutely horrid. It is very hard to keep your mind off it. Please try to stay strong. There is a very good chance that all will be OK.

lavenderlou · 29/03/2021 13:58

This is the ARC website www.arc-uk.org/

Mummy2O · 29/03/2021 13:59

I second using the Arc website. It is really clear and informative.

Original poster
LSaraf · 29/03/2021 14:12

Thank you both. I'll definitely check it out x

OP posts:
Original poster
LSaraf · 29/03/2021 19:19

How long did everyone have to wait for their results? They told us 3-5 working days and really hoping it will be 3-4 days so we get them before the long weekend!

OP posts:
SarahD19 · 29/03/2021 19:24

@LSaraf in our case it was around 3 working days for the rapid results and 3 weeks for the long term culture. It can vary as if the sample is contaminated, it can take longer x

SarahD19 · 29/03/2021 19:26

And huge good luck with it! I’ll be thinking of you and hoping for the best. Amniocentesis is pretty much the test I rate most highly x

Redskyyy · 29/03/2021 19:32

Hi @LSaraf sorry you’re going through this. I had the same, twin 1 had a NT of 3.8mm and a 1:36 chance of downs. I had the nipt and a detailed anatomy scan (because the risk of miscarriage with an amnio doubles in twins). The wait for results was awful and I was convinced it was bad news. Hang in there, there is still a higher chance baby will not have downs. Did they see any soft markers of downs on the scan?

GingerGetThePopcorn · 29/03/2021 19:50

I'm so sorry you're going through this. I could have written your post when we were in the exact same situation early last year. NT measurement of 4.1mm, combined screening gave a 1:7 chance of Down's. We were also told that there was no evidence of a nasal bone and the facial profile was flat (both soft markers indicating Down's). Couldn't have a CVS due to position of placenta, had to wait 3 weeks for amnio then another week for the result. Longest month of our lives.

Our amnio was normal and DC is now a healthy 7 month old. It's hard to believe now but I barely think about that time.

It helped us to talk through the various possibilities and what we'd do in each of them. We also did some research into Down's (I seem to remember a site called Positive About Down's Syndrome, and we watched a Sally Phillips documentary on YouTube which was really interesting).

We had decided that if we got a diagnosis of Down's and the baby's physical health seemed good enough to offer quality of life we would continue with the pregnancy, but I am pro-choice and certainly wouldn't judge anyone for making a different decision.

I hope you don't have to wait too long to find out. Look after yourself in the meantime.

Tig2010 · 29/03/2021 23:42

Hello @LSaraf - we were in your position five months ago and the wait was one of the worst (if not the worst) experiences of my life. I’m so sorry you’re having to go through it. We had a nuchal fold measurement of 4.1 mm at 11.5 weeks and the measurement stayed around there until 12.2 weeks when I had a CVS. I believe result wait times for CVS and amnio are similar. We had our first set of CVS results back within 48 hours (test on Tues just after lunchtime, results in Thursday afternoon), but were told that we could have been waiting over the weekend. We then waited almost 4 weeks for our second set of results because our sample had to be grown in the lab. We were fortunate that the tests came back clear, heart scans were fine and all scans after that have been ok so far. I’m now at 34 weeks and I believe risk levels are back to normal. If I can help with any info, or just be someone to speak to on here about what you’re having to go through, please reach out. Remember that even with an NT of 4.1mm, the odds of everything being ok are still in your favour.

Original poster
LSaraf · 30/03/2021 14:01

Thank you so much for all of your replies. It really helps to hear about positive outcomes. Keeping everything crossed that we get the first set of results soon.

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SarahD19 · 30/03/2021 14:24

@LSaraf I shall be keeping everything crossed for you. Many of us know how anxiety provoking these waits can be. As another poster said, easily one of the worst times of my life when I faced a similar situation, although I realise all our situations are unique xx

Original poster
LSaraf · 30/03/2021 17:07

We just had a call to say that the amnio came back clear for Downs, Edwards and Pataus. This feels like a massive relief although I now know the next wait begins for the second set of results and the echocardiogram in 4 weeks time. Will try to stay hopeful though x

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SarahD19 · 30/03/2021 17:14

@LSaraf that is amazing news! One step at a time, you’ve got this. Sending positive thoughts your way x

Dogsandbabies · 30/03/2021 17:17

Ah great news OP! I had similar readings as you and just had the all clear on the echocardiogram following the all clear from a CVS 7 weeks ago. Hopefully you will get the same in a few weeks.

Mummy2O · 30/03/2021 19:54

@LSaraf I am so pleased for you. That is wonderful news.

GingerGetThePopcorn · 31/03/2021 21:41

@LSaraf great news! Thanks for coming back to update. I know it's not the all-clear yet (I remember in our case the second set of results took a really annoyingly long time to come back) but to be negative for the "big 3" is a really positive thing and you can let yourself feel relief!

Loniann · 02/04/2021 17:07

Hello op, I have just searched the posts as I'm in the same position atm and struggling a little. I have just had a cvs done yesterday as my nt was 6.2 mm at 12.4 days and also potential cystic hygromas on the neck and abdomen. So we are high risk end of genetic problems aswell as structural, I was hoping to see if you have had any update on you're test reuults yet? The waiting is awful I keep going from tears to numb and then just nothing.. I feel empty right now and find it hard to speak with my partner about the facts and figures as he is trying to remain positive. Wishing you all the best ❤️

Original poster
LSaraf · 02/04/2021 17:59

@Loniann Thank you for getting in touch. I'm so sorry you're going through this. The last few weeks have been probably the hardest of my life and the worry has been unbearable! I had the amnio (rather than the CVS) last friday and we got our first results back on Tuesday and were told that we are clear for Downs, Edwards and Pataus. They told us it wpuld be 10 working days for the next set of results so with the bank holiday that will probably still be quite a wait for us. Last weekend I was in such a bad place, waiting is the worst! But this week I've been trying my best to get out in the sun and stay busy. Please so feel free to message me any time if you want to chat. Keeping everything crossed that things turn out ok for us both xx

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Original poster
LSaraf · 02/04/2021 18:00

Thank you so much to everyone who has shared their experiences and sent messages of support. Has been really helpful to share during what has been a really rubbish time x

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Loniann · 03/04/2021 09:48

Hello Lsaraf, I'm so glad you have had good news ❤️ I'm hoping the rest of your results will come negative for you it must be a weight lifted for now! Your positive outcome has given me a little hope and I feel more calm after having my test Done now so just hope that we will be able to share a positive story to for any other parents going through this. Thankyou so much for replying xx

Original poster
LSaraf · 08/04/2021 14:17

@Loniann have you heard anything yet? We are still waiting for our second set of results. Was feeling ok for a week or so after the first phone call but now back to constant worrying!

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Original poster
LSaraf · 13/04/2021 13:56

How long did others have to wait for the full amnio results? My procedure was 18 days ago and starting to get really anxious again that we will get bad news this time, despite clear results for the main three trisomies. I called the FMU this morning and they said they haven't had anything from the lab yet. Can't stop watching my phone!

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ladyp87 · 13/04/2021 14:23

I had my amnio on the 1st April, I'm not expecting the full results for about her ten days yet. The full array can take three to four weeks.