Waiting for Amnio Results

[LSaraf]

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.

Hey @LSaraf - we had a long wait for our CVS array results. It was supposed to be 2 weeks but then our sample was quite small and needed to be cultured, which meant we heard almost 4 weeks after the test was done. The lab also didn’t communicate to our midwives that the sample needed to be grown until we chased them after the 2 weeks was up. I remember having exactly the same panic as you that the length of time meant bad news, but my understanding is that’s not the case at all. They get the results they get, and the length of time reflects more on lab capacity and whether the sample needs time to grow. I hope that helps. Hang on in there and keep focusing on the positives (your NT wasn’t that high, three key trisomies all clear, rest of scan clear). These are all good indicators that things will be ok.

Thanks so much @Tig2010 that's really good to hear x

FMU called back to say that it will probably be another week before they have grown enough genetic material to do the full microarray. The wait goes on! It's felt like a lifetime since we first got the news about the high NT measurement a month ago. Finding the uncertainty so difficult! The 20 week scan and echocardiogram are booked for the 23rd April so just have to try and get through these final 10 days of waiting I guess. My thoughts are with anyone who has been through this process or is going through it now x

It’s the worst waiting game. Some of the lowest moments of my life. You will get through this though. Just try to bat away the negative thoughts and keep focusing on the positives. Our story was very similar to yours - NT of 4.1mm at 11.5 weeks which had reduced to 3.3mm a week later. And the NT reading you then got at 16 weeks is something I think you can ignore as it doesn’t mean anything at that stage? Our little boy was born recently and is doing well (and that’s in spite of being a tiny bit premature). I hope our positive story gives you faith that things are very likely to be fine. Please carry on sharing how you’re feeling on here if it helps! xxx

@LSaraf I can completely understand the wait is awful. Also to make you aware even the amniocentesis cannot tell the whole story - and there are some real unknowns.

I was in your situation just over a year ago. Had the initial stage clear. Was told tiny percent of anything being flagged in the final round as ultrasound was all good.

We then got the exceptional result of “low level mosaicism” for Edwards Syndrome from long-term culture. Just days after getting a letter in the post suggesting Confined Placental Mosaicism. We got told to prepare for the worst possible outcome including higher risk of death.

Anyway, long story short, we now have a perfectly healthy baby. Aside from these prenatal tests, there is nothing to indicate anything wrong. She is very strong, in perfect health and hitting all milestones. Yet the months of stress we had - 6 months of the pregnancy overshadowed by the issues the tests flagged up is crazy.

I only hope you get to enjoy your pregnancy as much as possible. And I wish you the best of luck in these test results. Thinking of you xx

Good morning everyone
Thought I'd jump on this post, I'm having my test tomorrow morning and I just can't help but feel like it's not going to be positive news 😔

I am 33, nearly 16 weeks pregnant and my 12 weeks scan all seemed perfect and then I got the call to say I was high risk for DS - 1:18
I am so worried and also I feel so so guilty, I was terrible wirh remembering to take folic acid and I can't help but feel this could be something that's caused a problem.

I have read lots of positive stories on here which is keeping me hopeful 🙏🏼

Hope everyone gets the results they wish for, the wait really is so so tough! Xx

How is everyone doing?

Iv just got home from my test, it was more painful than I had thought but it's done now and it's time to wait 🤞🏼🙏🏼
I just wanted to share my numbers in the hope others can too and also share their stories. I'm trying to stay off the internet but I am finding it helps - especially this app!

My NT: 2.2mm
PAPP-a: 0.41
HCG: 3.73

My risk is 1:18
Any stories / experiences welcome whilst I wait for the results 🙏🏼

Hi @mar1987.

My risk for DS was 1 in 22 (along with 1 in 9 for. Edwards' and Patau's syndromes). My NT was 3.3, so higher than yours but still within the limits. I had an amniocentesis in the end, which came back clear.

The waiting is just horrid. I feel for you. Have they given you an indication of when you can expect your results?

Ho mummy20
Thank you for your reply
And so pleased for you that your results came back clear!

The amnio test was more painful than I thought it would be and the sample was blood stained so they have warned it could come back inconclusive 😩 I hope that's not the case - they said I will get my results on Tuesday! 🙏🏼

The waiting really is the worst
Xx

@mar1987

I’m 34 with 1:4 chance.

PAPP-A .24
BHCG 6.84
NT normal

Received both amnio and NIPT results yesterday and baby is normal. 🙌🏻💕

@LSaraf I too am waiting on the further results of the amnio. The genetic specialists said it’s pretty rare that it does come back positive. Hopefully the wait will be over soon with an ideal outcome

Hi @mar1987

Hope you are feeling mostly recovered after your amnio! All the best for your results. Will be thinking of you.

Thanks for your message @JaiPow hoping the wait will be over after this week Nd hope it's not too long for you either!

Our echocardiogram has been moved to tomorrow and hoping the further amnio results will also be this week.

Just about to leave for the fetal echocardiogram and 20 week anomaly scan. Feeling so nervous!

@LSaraf good luck ! Cx

Thank you! Heart scan was all good. They didn't do the anomaly scan today in the end but booked in for Friday and they said to expect second amnio results in the next couple of days. Good luck to everyone else waiting for results x

@LSaraf
Fingers crossed for you! Let us know how you get on xx

Hi all,

Just wanted to send a happy update. We finally got the call this evening to say all results are normal! Can't quite believe it after all the stress and anxiety of the past 6 weeks! We still have the anomaly scan on Friday but knowing that the baby is chromosomally normal and that the heart is fine is an enormous relief!

We also found out we are having a little girl!

Thank you so much for all of the messages of support and advice over the past weeks. It's kept me sane! Best of luck to everyone waiting for results.

Xx

@LSaraf I am so glad to hear that. I hope all goes well with the anomaly scan on Friday.

@LSaraf 🙌🏻🙌🏻 I feel that relief with you 💕

I’ve read so many posts like this and experienced it myself. Feels like a massive flaw in the system.

@LSaraf amazing news! I’m so pleased for you and hope you can enjoy the rest of the pregnancy xxx

Anomaly scan was all clear and we've been signed off by FMU. Such a relief! Thanks to everyone for positive stories and giving me hope. Xx

@LSaraf fantastic news!! So happy for you x

@LSarafao thrilled for you! 💕💕

I found the threads and stories such a helpful perspective in my own journey. Glad yours is positive

@LSaraf I am so pleased for you.

How are you feeling? x

Hi ladies.
So I have had the most awful time this week. I had my 20 week scan yesterday which I was told nuchal fold was enlarged. Was told to go bk today for a more detailed scan to which they said yes its enlarged 7.3 was biggest measurement she had. Everything else with baby is perfectly normal, heart, limbs etc.
Going bk to my 12 weeks all was normal, all bloods came bk as low risk 1 in 10,000 for DS.

They have offered me an amniocentesis which I'm weary about. Iv been in tears since yesterday's scan. I cant concentrate on anything else. I'm so scared if I take the offer I will lose baby. But on the other hand I would really like to find out. Has anyone else been in same situation and if so could u share your story. Ty so much ❤

Hi. I know this was a little while ago, but I’m going through this exact same thing as we speak! Im all over the place, second attempt Cvs on Friday !
Can I ask how you got on!? Sorry if this is sensitive.
Xxxxxx