Awaiting NIPT results

[Sunflower1492]

I had a NIPT blood test today after I received a 1 in 63 chance of baby having DS.
My results for the initial combined blood tests were:

HCG 197ml
PAPP-A 2368 L
NT 2.1 mm

I'm 28, this is our first pregnancy, no risk in terms of my physical health.

Don't know how to feel or what the initial results actually mean?! Has anyone been through a similar situation and have positive stories to share? NIPT results are due back Wednesday/Thursday. Praying for happy news.

@Sunflower1492 hi, I’m in the exact same boat. Baby has 3.5mm fluid on the neck and my combined screen came back as high risk. NIPT is being sent off on Monday so I’ve got another 10 days till I know my results.

How are you? I’m in pieces, I’m so scared and worried and every emotion inbetween x

@Sussexbysea I'm so sorry you are going through this too!! Our NT is normal but HCG extremely high and PAPP-A low.
I feel the same. We announced our pregnancy at 12 weeks so everyone is so happy and excited for us which makes going through this so much worse. I'm hoping for happy news for both of us! Can we stay in touch?

@Sunflower1492 of course we can. Everything has happened so quickly for us. 12 week scan on Thursday, referred to St. George’s in London on Friday morning and then told my combined screening was high risk on Friday afternoon. Will you have the CVS after your NIPT results if they come back high? I really struggling, I’m going to ask for some support after all of this. If it’s good or bad news, I think I’ll need some support xx

That is so fast! We had our 12 week scan last Tuesday and didn’t receive the call from the midwife until this Tuesday, I then went on Friday for the NIPT. I hope so much that the results will be back Wednesday, the wait is literally killing me. If the NIPT comes back high risk I don’t know how I’ll cope, but yeah next step for us is an amniocentesis. I can’t bear to think about it.
Is this your first pregnancy? I’ve read loads of positive stories where NIPT has come back low risk, I’ll be hoping and praying for us! I think I will need support either way too. It’s such an awful experience to go through isn’t it? I’m so glad you reached out. The screening midwife told me to try and keep busy as the results mean nothing until the NIPT results are back xxx

@Sussexbysea sorry I forgot to tag you in my reply xx

@Sussexbysea I forgot to add that many of the forums I have read mention ARC (anti-natal results and choices) as a great source of support. Their number is 0207 713 7486. I haven’t called them yet myself but think I will Monday xx

Is it ok if I join this thread? I'm so sorry to hear you guys are in this boat too. The wait is atrocious. I'm expecting twins but one is measuring smaller and had a higher NT at the scan than the other. The bloods don't make much sense as because there are 2 babies they cant determine which hormones relate to which twin. One came back high risk after the 12 week scan (the other seems ok) and I have now been waiting over 2 and a half weeks for my NIPT results - they called on Wednesday to say the results would be delayed even more because they had to retest but didn't elaborate - so obviously I'm even more worried now! I'm going to contact ARC next week as it's an incredibly difficult thing to face without some outside support. Xx

@JennyMY of course! Just so sorry to hear you're going through something similar. I can't believe you've been waiting so long for your NIPT results. I hope you get them soon!! Keep us posted xx

@Sunflower1492 I’ve been pregnant and few times but this will be our second tome of past 9 weeks. We have a 3.5 year old, she was the perfect pregnancy. I’m nearly 36 now though so that counts apparently.

Midwifes who say try not to worry..... they clearly have not been in this position before.

Where in the UK are you?

@JennyMY

I'm also having twins - my first NIPT came
Back as no result after a 2 week wait (done privately and blood tests sent to America!) so had to have it redrawn. Fetal dna levels weren't massively high for either and they didn't give me individual risk levels for each twin

Your bloods are almost exactly the same as mine were, and I was given a 1 in 61 chance of DS before the NIPT. The first NIPT came back inconclusive because it was contaminated which was even more worry piled on! Second one worked though and came back clear, very low. Baby is now three months and doesn’t have DS. I know what a bloody hard time it is, lots of love

@Amanduh thank you so much for your message! Do you remember what your MoM (standardised) results were? Mine are HCG 4.73 Papp-A 0.58.
Must have been an awful time for you with the first test coming back non conclusive. Thank you for your message it’s given me a little hope. My results are due back Wednesday xx

I know it’s so so hard, but try to think that 1 in 63 is a 98.5% chance that everything is fine, I clung to that - they are great odds. My HCG was 4.75 and Papp A was 0.5 something but I can’t remember the exact figure.. very very similar to you though. Your NT measurement is good too. Just think that the initial results are just calculated probability by a machine, there’s nothing diagnostic about them. Fingers crossed for you, the wait is awful isn’t it. I’ll be thinking of you Xx

[quote Sussexbysea]@Sunflower1492 I’ve been pregnant and few times but this will be our second tome of past 9 weeks. We have a 3.5 year old, she was the perfect pregnancy. I’m nearly 36 now though so that counts apparently.

Midwifes who say try not to worry..... they clearly have not been in this position before.

Where in the UK are you?[/quote]
@Sussexbysea I'm in Wales, where in the UK are you?
The first midwife I met with made me feel ten times worse, she came across anxious and like she didn't understand the figures herself so my anxiety went through the roof. The screening midwife was much more matter of fact and said the results are so variable.

I have cried everyday since and everyday feels like a struggle. I hope this new week brings good news for us all xx

@Amanduh thank you so much, that's so kind. And you have helped reassure me. I'm going to try my best to stay positive. I'll let you know when I get the results xx

@Sunflower1492 I’m from the south of England. My NIPT bloods aren’t being sent off till tomorrow and won’t be with the lab till Tuesday. My wait starts tomorrow. Apparently the midwives missed the post 😩

Apparently I’ve got a 1 in 12 chance (so basically less that 10%) that it’ll be Down’s but that does mean that I’ve got a 90% Chance it won’t be. Mad that they don’t put that spin on things.

Yes 90% chance of the baby not having it are great odds and I wish they would make a point of saying that! Also I can’t believe they missed the post for something so important that is effecting you so much!! Have they said when your results are likely to be back? Xx

@Sussexbysea Yes, it's crazy how fatalistically it's phrased when they're giving you the odds. It's bad they missed the post (though I've come to expect these things tbh). For something this important you would think the system would be more efficient. My partner thinks these delays are absolutely cruel. Thinking of you and wishing you the best for this week. I have my 16 wk appt with my consultant tomorrow so I'm going to see if she can find out more about why my results have been delayed. This anxiety is awful isn't it? X

@JennyMY my anxiety is through the roof. I’m going to take a couple of days off work, my house looks like it’s been burgled. I need time to sort it out and time on my own. My 3 year old is a good distraction but she’ll be back at nursery soon

@Sunflower1492 how you feeling today?x

Trying my best to keep my mind busy. How are you? Praying for good news Wednesday.
Hope you're okay, did you take some time off work? Xx

@Sussexbysea xx

@Sunflower1492 I’m taking this week off work. I only work three days a week anyway.

I thought today was Friday, my friend looked at me like I was mad. I think this week hasn’t had time to process any events yet. I’m going to call the number you shared tomorrow late morning, I need some support xx

The clinic rang through while I was having my appt today and the test has failed the retest - so I've been advised to have the amnio this week, a procedure we were really hoping to avoid. It's now over 3 weeks since I was told of Twin B being higher risk 5 days after 12 week scan - we can't wait another agonising 2 weeks for another NIPT which may or may not fail. This system is so bad! 🙁x

@JennyMY do you mind me asking why it fails? When are they planning on taking amino from you? Xx