1 in 15 chance

[inneedofhelpandsupport]

Hi all, I'm new on here but thought I would give it a shot to try and get some help, support, advice or reassurance for my current situation as I'm going slightly mental!

So after a 2.5yr journey trying to conceive, our first round of IVF was successful in April this year (thank you god) and we've just had our 12 week scan.

The NT was 1.2mm and all looked good and we opted for the bloods too as I'm 40.....low and behold, I got a call Monday to say following the blood test results I'm 1 in 15 chance of Downs.
bHcg - 2.75
PAPP - A - 0.31

We have booked a NIPT this Friday but I cant stop thinking, crying, googling!

It would just be rubbish if we were the 1! I'm trying to hold onto the stats of less than 7% chance and the NT results was good.

Any comments would be much appreciated smile

Congratulations! I don't have much experience with this but just bumping for you until someone else comes along.

Sometimes the results aren't always accurate and if your NT looked good, that's reassuring.

Thanks CupOfTPlease, I'm completely new to this so not even sure how to 'bump' and originally posted on a chat where someone kindly advised to repost here. I'm trying to look at the positive of the NT results but just so scared....

I think given your age and your long journey to get to this point, I would focus on the positive that you are in fact pregnant with a gorgeous baby!! Yes there is a small chance that it may have Down's syndrome, if you knew for definite it did, what would you do?!

I don't think combined testing is diagnostic at all especially if you are 40 as this will impact the probability of chromasomal abnormalities a lot. Great that you have booked in Nipt, which will be so much more accurate. I really feel for you. I had DD2 at 41 after miscarriage and also had a scare at dating scan but all clear in the end. Hang in there and don't worry too much for now even though I know how hard it can be to chill until you know for sure.

Thank you all so much for your comments and taking the time to post.
I've just had a call this morn from the hospital to see how I am...I explained we've chosen the NIPT tomorrow...I asked some questions about the results and the fact the NT is 1.2mm, is that not a good sign...she said everything combined goes through a system and comes out as a screening...she said prob my age is the main factor... :(
Sleepyquest you are absolutely right and I am trying to focus on that but its so hard...and think I've been extremely naive re: my age and never really took it into account properly that I would be high risk so never thought I would be in this situation.
I should be grateful and thankful for the result so far but my mind wanders and I just dont know what I would do...

Rainbowpurple I've heard they blood results can cause a lot of upset and confusion...like I say I'm trying to stay focused and positive until I know anymore....I am also questioning if I should have done the NIPT or the CVS?!!

I did Nipt first because there is no risk to baby with this. I am not trying to give you a false hope but at the age of 40, even with a slight blood imbalance or raised NT, the screening result comes up very alarming I found. Don't worry too much until you know more accurate result. Lots of hugs xx

thank you Rainbowpurple, I hope it is a false alarm.....the NIPT tomorrow and then the wait.... commetns greatly appreciated :)

Hi, I had something very similar a couple of weeks ago. I'm 39 and we had ivf too, so I know how you're feeling. My results were almost the same as yours. We had an awful midwife when I got the blood drawn for the nipt test which really didn't help, but the test came back low risk which was a massive relief. I got the letter with the initial high risk result through the post on my husband's birthday and phoned him up crying on his lunch break, poor guy. No phone call which I'd expected...

When I looked at the initial result breakdown afterwards I would have always been high risk because of age, so with hindsight I think I'd have gone for nipt privately earlier to save those two weeks of stress!

There's another good thread on this board, called "normal NT, low papp-a" or something like that which I found very reassuring.

And don't spend too long googling low papp-a. The unhelpful midwife just said we only want you to deal with one stressful thing at a time so just ignore that for now (not very calming!) but my community midwife just said not to stress about it as it's not a great indicator and will just mean extra growth scans and possibly you might be induced a bit early but more likely they wouldn't let you go overdue.

Hope you can manage to put it to the neck of your mind a bit but it's hard.

1mm NT
2.70 for beta hCG MoM
0.38 PAPP-A MoM

These were my results, so almost identical
@inneedofhelpandsupport

Wow OM82 results almost identical :)
Thank you for your post, means a lot to know people are in or been in the same or similar situation..it’s so emotionally draining though.
I was even googling algorithm tests this morning!
I’m wondering if the IVF has played a part in my blood results, obviously I’m 40 so that’s a biggy but scan/NT ok so just hoping it’s this numbers lottery thing!
Do you mind me asking OM82 what was your risk?
Have the NIPT today be hope everything still looks ok ok the scan initially…will keep you posted x

Hi @inneedofhelpandsupport, I hope you're doing okay. If possible try to stay away from the google wormhole but I know that is very hard!

I think ivf does has an impact on the results, but I'm not sure which way. Someone told me that the ivf process is a bit more selective (i.e. embryos not making it) than natural conception but that could be a load of rubbish!

I hope you have an okay weekend, just treat yourself to some nice food and curl up on the sofa with a book/film if you feel like it, I certainly didn't feel very social when I was waiting for the results.

My initial result was 1 in 24, but the detailed breakdown had it as 1 in 131 (based on my age) which then rose to 1 in 24 from the lab data. So I would have always been classed as high risk based on my age - assuming 1 in 150 as cut off!

So home after my NIPT. Scan looks all normal for 13+5…measurements all in line for this term and NT 1.5mm and baby moving lots.
It’s now just a matter of time…. When I arrived the lady on reception said welcome to the pregnant and 40s club and we were chatting…she said we are immediately high risk because of this irrelevant before any testing (which I knew but didn’t think too much)…she then said…imagine a bowl of 15 smarties and choosing 1! Bless her trying to help me.
Any advice welcome for getting through another horrific 2 week wait!

Hi, just wondered re the two week wait is that the NHS timescale? If you can afford it I know you can have it done privately for around £500 I seem to remember (my wife had it done earlier this year, we were an ivf pregnancy, my egg her carrying ) the results come through in a few days.

Sorry if you already know about this option I just wanted to make sure you were aware it’s an option.

Best of luck

Thank you for the comments.
Nipt done private but 7-10 days is still the norm for results.
I’m going crazy already and it’s only been a day!
Can’t stop thinking, worrying, analysing my combined results, any advice or words to support would be greatly appreciated x

Have everything crossed for you

Same here! Everything crossed for you. Mine came back within a week even though they (private) said it will take up to 2 weeks so wish you for a rapid response.

Still vividly remember when I recognised the number on my phone when it rang to tell me the results. Stay strong and be kind to yourself. Don't worry too much. Hugs xx

Good luck! Keep us posted

Trying to take one day at a time and get through them...stomach in knots, feel physically sick and my mind is going everywhere!
Rainbowpurple they said I would receive a call if its high risk and an email if low so I really don't want the phone to ring!! keep checking my inbox every hour!!
I actually called ARC yesterday for a chat and the lady was lovely.
I'm just trying to hold onto the fact, I'm 40 and will be 40 8mths when term so thats always against me on the screening, the NT is good at 1.5mm and the lady said yesterday, hormones can vary so much that the bHCG and Papp A can vary depending on this...please god, be kind to me :)

Aw, that's so nice that ARC lady was nice and you had a good chat with her. I keep everything crossed for you!

Thanks, I just wish I could meet up with the ladies from this thread for a cup of tea and piece of cake and talk about it more.... the posts and words are reassuring and so helpful as many people have been there/are there or know someone who has been there.
I just like to know I'm not on my own... and also when people take the time to post there actual results from the combined screening...this is what I keep coming back to -
NT 1.5mm at 13+5
bHCG 2.75
Papp 0.31
Praying its just my age that's increased my stats so much (halo)

Into another day and still feeling so anxious and nervous.
This is such an horrific time...I just want to be in my happy bubble again and look forward to our future...instead my mind is racing everywhere :(

@inneedofhelpandsupport take it one day at a time my dear. Try today to have 1min of happy bubble. meditate on it. As for the mind racing thing... well I think (as I am not yet a mother) it never leaves you - no matter the circumstance.

Try focusing on "less than 7%" and be strong for both of you.

Thank you for the comments again! I feel I just need and want to keep talking on here for support as it makes me feel better…people know what your going through.
To think this time next week I may know!

So I had a call today and nearly s**t myself…it was the dentist!
Then I checked my inbox and had an email so my heart leaped but it was to say, they are still processing my bloods and it will take 3-5 working days for the results.
So into next week we go….I am so tired and although it feels like it’s become the norm I’m still trying to have a positive outlook…