Downs risk high, Papp A low - broken mum

[alotoftutus]

Hi,
Yesterday I got my results back and learnt baby has a high risk of Down's syndrome- 1:6 so a very high risk really.

I had the NIPT today but am completely broken. I don't know how to get through the next 2 weeks waiting for the results.
I know the test is pretty accurate but wondering if I should have gone for the cvs to get a definitive answer.

Results break down

BHCG 25.20 IU/L 0.80 (what does that even mean?) what should it be?

NT measurement 2.3 mm 1.87

PAPP-A 620 mlU/L 0.4 apparently that's low?

Midwife wanted to prescribe me asprin for low Papp A - doctor wouldn't sign it off and said I was low but not low low! Midwife was clearly irritated by this and on the way out told me to buy some if I'm able to. Is there a particular type I should take or dose? Does aspirin even come like that? I've never actually taken it.

I'm 38 which obviously has increased my risk but 1:6 seems like a dead cert. can it be anything other than downs with those results? I need to be mentally prepared.

Don't really know what I'm asking, my heads all over the place sorry.

How do I get through the next 2 weeks waiting for the results 😭

Hi there I'm also waiting for an nipt result - really sorry you're going through this. My understanding is that 1 is the norm - so 0.8 is v close to normal and 0.4 is a bit lower but there can be other reasons. From my crazy googling low Papp a and high HCG are soft markers for downs - so you only have the slightly lower papp a, and this can be other reasons. Your NT isn't high, so I imagine your age has pushed up the risk like you say. I have everything crossed for you, still 5 times out for 6 it would be ok, or 84% of the time :). My NT was 3.4 so very borderline high, and my age (35) have pushed my risk up I think. From what I read bloods are very dependent on individuals so stay hopeful ❤️

@LittleBlue222 Thank you for commenting. Sorry you are suffering too. It's the worst pain isn't it. I feel like I can't catch my breath. The call came as such a shock I just cried down the phone at the midwife the entire call.

When did you have your NIPT? Hopefully the results come soon and are what you are hoping for.

How many weeks are you? xx

I was given aspiring for Papp-a 0.45 so slightly better than yours. Your midwife is right. 5 years ago they told me the dose was 75mg per day.

now with second pregnancy, better Papp-a but worse hCG I’m taking 150mg aspirin with Evening meal. The consultant said the dose has been updated since 5 years ago.

I’ve read it’s best to start at 12 weeks to prevent preeclampsia and no later than 16 weeks (said it has the best effect of mother starts taking it at this stage)

sorry you’re going though this. I’m waiting for nipt results too, after been given a high risk as well.

hope you get good news, take care of yourself, take it one day at the time.

the aspirin I take is 75mg/pill and I take 2. I got the coated ones, better for stomach.

independent of DS risk, low Papp-a gives you risk of preeclampsia, low birth weight, pre term birth.

for me it was low birth weight and static growth (no growth) in the last 4 weeks.

bc of the low Papp-a I was given lots of extra scans in 3rd trimester and it was good as they picked up the growth issue and induced me.

they gave me all this and I had better Papp-a. You need to talk to your midwife as she seems sympathetic and ask for another consultant, once you get your nipt, you have enough stress now.

@alotoftutus how are you doing? It's a big shock, especially after the relief of the scan and thinking it's all ok. Hope you're able to have some time for you. I had mine last Friday and the result has now come back as a low risk, v relieved. I actually had my 15 week midwife appt and she saw what a state I was in and called the hospital to chase, don't know if that made a difference but the result came in a few hrs later. I hadn't called to chase myself as just in a bit of a mess. Have everything crossed for you. I'm 15 weeks 2 days acc. To the scan but that's ahead of what I thought! How about you?

@LittleBlue222 oh I'm so happy for you (this made me cry). Do you feel confident in the result and relaxed now?

I can't imagine going back to enjoying my pregnancy now, I'm a nervous wreck.

I'm a few weeks behind you 13 weeks on Monday due March 19th. You should join the Feb / March 2023 due date group. It's really friendly and supportive.

Congratulations xxx

@CristinaNov182

Hi, thank you for your message.

I'm ok thanks - well not really, very up and down! How about you?

When did you have your NIPT? Mine was Wednesday so hoping the results come next week rather than in 2.

Thanks for the info regarding aspirin. I'm going to call my midwife tomorrow or possibly GP and see what they say. The doctor I saw was horrible and treated me like I was stupid for following the midwives directions to get asprin.

I’ve spent a lot of time on forums reading about different outcomes and I don’t really think it helps. But I’ve noticed this combined test is not reliable at all, women with a very low risk like 1:2000 or smtg discovered their baby had DS at birth, no markers etc. and women with very high risk were cleared by nipt. I hope in the future they do the nipt for all women from the start so there is no more unnecessary stress .

I’ve done mine on Tuesday so hopefully I’ll know in a few days.

It’s my second time getting a high risk, the first time the wait was worse. I’m trying to be a bit detached, though seeing the baby move at the scan made it real. There is the 20 week scan as well where lots of different issues can be picked up, and then the stress of the last few months with the stress of counting kicks all day, plus fear of labour… I didn’t enjoy my first pregnancy, had a horrible labour so… the way I’m getting though this now is to do other things, reading a book, watching a movie, forget I’m pregnant basically, still possible until the baby starts kicking.

im sorry if I’m a downer, but my plan is to postpone or ignore stress until it’s time to face it.

fingers crossed for all of us

@alotoftutus thank you so much I've got everything crossed for you, it's so horrible. Hope you've managed to have some time for you and you hear v soon, and for @CristinaNov182 as well. I'm now anxious about 20 week scan, after an anxious last pregnancy I'd been trying to be calm and chilled about this one, but that's out of.the window ;) take care both and really have everything crossed for you

Hi OP,

I feel for you, as remember how I felt 6 years ago with a 1 in 12 chance and also low Papp a. Thankfully, the NIPT test came back with reassuring results. A friend of mine also got a 1 in 4 chance on the combined test but all was well.

it seems that the Papp A skews the results massively in suggesting DS, but in the majority of cases all is fine.

I know it’s tough, but try to think positive that at present there’s only a 20% chance of a problem and 80% chance all will be fine x

I would definitely recommend buying the aspirin yourself @alotoftutus - it’s cheap as chips. Take a 150mg dose once a day (usually sold in 75mg pills so take 2)

every dr/midwife I’ve had said that it’s a really good thing to take during pregnancy for various reasons and no risk to baby from it so I would definitely go ahead!

@CristinaNov182 how are you? Have your results come back yet?

I'm still waiting. I've become completely disconnected from the pregnancy in the last few days. I went from being heartbroken and having a panic attack to just feeling nothing at all. I'm totally numb.

I tried to get asprin the other day but made the mistake of telling the pharmacist what it was for. She said they couldn't give a pregnant woman asprin without a prescription!! I need to go somewhere else and not tell them this time or just get it online.

My first was pre term & believed to have stopped growing about 34 weeks. If all ends up well with this situation I want to avoid going through that again. This has been enough drama to last a lifetime!

Oh OP, I do feel for you. I had 1/9 results with low papp-a, but my NIPT came back low risk and my baby doesn't have Downs.

Re the aspirin, just buy some from your supermarket. It's a bog standard painkiller and you don't need to tell them why you want it.

Thinking of you

I think it’s normally a low dose aspirin (75mg?) you need rather than standard painkiller strength? I’m not medical though so hopefully someone here can let you know the right strength for your situation

OP I'm so sorry you're going through this. I can advise on the low paap a and aspirin. I've also got low paap a. The cut off for "low" in my trust is 0.4 which is probably why your Dr was a bit dismissive- it is low but just on the cusp of being worrying. Remember this is just a risk factor, not a diagnosis - tonnes of people with low paap a have perfectly healthy babies. The aspirin you need is 75mg. You can buy it in Asda or b&ms etc. You take 150mg (so two pills) once a day until around 36/37 weeks

@Bootsandcat Yes it’s the low dose of 75mg and I take 2. They told me 150mg. I take the stomach coated ones so it doesn’t disturb my stomach. It’s about £2.

they didn’t give me a prescription now or during my first pregnancy (they said it’s cheap and just buy it) and when I started showing last time I told the pharmacy it’s not for me, cause they do ask.

@alotoftutus i got my result from nipt, it”s low risk. I’m going to be ok until before the 20 week scan. I felt the same, I still feel detached but not anxious. Sorry you’re still waiting. I hope you get good results soon, I’ll be thinking of you.

@Onebabyandamadcat the cut off here is 0.5. And it was 0.5 at my previous hospital too. I had 0.45 with my DD and she stopped growing the last 4 weeks. I’d say better to take the aspiring then not. Last time I started taking it late, bc the consultant saw me at 16 weeks (plus he gave me only 75mg) and in the meantime I‘ve read you need to start before that to have an effect, best at 12 weeks. The consultant at this hospital (different city) said 12 weeks. And this consultant also said I would have qualified for aspiring even without low Papp-a and previous pregnancy experience bc now my bmi is over 30 :( I put 2 stones on over the pandemic. (It was 32 at the beginning, now if I lose 2more pounds I’ll be just under 30, I’ve cut out sweets and moving more)

Oh @CristinaNov182 I am so happy for you! What an absolute relief. Sorry you are feeling disconnected too. It's such a strange feeling. I imagine it's a normal response to this kind of trauma and hopefully in time you will feel bonded to your bubba again.

Thank you all for your asprin advice, I picked some up today so will start taking two. Xx

Hi there

hope it’s okay to post here 💕

I found a lot of comfort reading various posts the last few weeks so wanted to add my journey in case it might help anyone when it feels overwhelming and there’s not much hope.

I was given a 1/141 risk for Downs initially which was high but not that high, so we were worried but remaining hopefully. The Nt was 1.3 and nasal bone seen but my bloods were way off at hCG at 3.63 and Papp-a at 0.49

We did the harmony test through the Nhs and it came back twice as inconclusive which sent me into a tailspin of worry and thinking the worst. I totally convinced myself something was wrong and detached from the pregnancy for the best part of 2 weeks. I have a higher BMI which may have caused this result.

We ended up having amnio as I needed to know for sure, it wasn’t that painful but a bit weird feeling but it was over quickly.

we just got the all clear and ended up knowing it’s a girl! Relived is an understatement.

just wanted to post this as these boards gave me so much comfort hearing peoples stories. If you are going through similar please take care of yourself, try to not worry too much (I know it’s impossible) and please believe the numbers, it will most likely be okay!

whatever happens and whatever you decided on the outcomes will be the right decision and you will have lots of people here to hold your hand. ❤️ X

@Twokitties thank you for sharing I'm so pleased you got a healthy result. Congratulations on your baby girl.

I am still waiting to hear something my NIPT was just over a week ago now and the wait feels like an eternity. To be honest I don't think for a second my results will come back as low risk. I've just had a gut feeling something isn't right about this pregnancy since day one.

@alotoftutus oh I’m so sorry to hear, I know exactly what you are feeling and I’m so sorry you are in this position. I felt like I was drowning in constant dread.

i would really highly recommend the amnio if you can, it comes back in 2-3 days and it will give you a definite. We were two weeks waiting with inconclusive NIPT tests and it was the worst experience of my life.

please keep us updated with how your results go! Sending you all the love for a good outcome too and here to hold your hand 💕

Have you spoken to ARC? I know it so hard but really try to look after yourself as much as possible, go for walks, listen to some podcasts, watch some crap telly- anything you need to get your mind off it for a while.

if it helps too, if we had had a positive diagnosis we would have sadly TFMR. X

@Twokitties I may go for the amnio regardless of my NIPT results, however i have to wait until I'm 15 weeks - I'm now 13+4 so would still be a bit of a wait unfortunately. I'm praying I hear tomorrow otherwise with the bank holiday it will now be Tuesday at the earliest 😩

@Twokitties sorry posted too soon.

I've not spoken to ARC but have read every word on their website. I have been really torn nan out what to do post results if they remain high risk. However I think I am leaning more towards TFMR too. I saw a little girl with what I think was quite severe DS at the Zoo the other day and I just looked at my husband and said "I don't think I can do that" I have 4 other children and I just don't know if I can stretch that far.

It's really awful OP. I feel for you. But the harmony/NIPT is very very accurate. They are checking right down the to dna. You'll get through the coming weeks and I'm praying for you that your NIPT result is ok.

Having gone through the same stress I've resolved that if we have another baby we will say no to the combined test and go straight for the harmony test. It's worth the money. The combined test casts too wide a net. One measurement and a few lifestyle indicators are thrown into a computer algorithm and a number is spat out. It's a blunt tool and I'll never put myself through that again.

Wishing you the best of luck with your results @alotoftutus the wait is agonising. You should be reassured that so many people on here end up with low risk and the relief must be immense.

Unfortunately I wasn’t one of the lucky ones and our little one was diagnosed with Down’s following higher chance NIPT and then confirmed with an amnio. It has been the hardest and most difficult decision of my life. We spent a lot of time researching and trying to decide what was best for our family (we have 3 boys) and what we felt was best for the baby. We made the heartbreaking decision to TFMR. It is such an awful decision to make I wouldn’t wish it on anyone. I only went through this a few days ago so my emotions are still so raw but I hope with time it gets easier.

My fingers are crossed for you all will be ok x

@HazyDays81 I'm so sorry. You must be in unimaginable pain. It's such a cruel decision to have to make. I can't even begin to think about how to come to the best decision for our family the thought just hurts too much.

Are you getting support from the hospital? Or somewhere? Be gentle on yourself.

I am so frustrated. I missed "the call" yesterday. I've had my phone on me for a week and a half and yesterday was out and didn't hear it ringing. I've tried to call back a billion times but it goes to voicemail. I won't get through until Tuesday now - if they decide to pick the phone up that is! The wait is killing me now. Longest and most painful 2 weeks of my life.

I hope you have lots of love around you right now xxxx