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Antenatal tests

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Original poster

Raised HCG and low PAPP-A - 1:25 risk for DS at 26 - first pregnancy

16 replies

Bwin020 · 04/08/2021 22:29

Hi everyone,

I had initially commented on a thread but think it had already gone a little bit quiet.

I am feeling lost and a bit alone. I am 13 weeks and 5 days pregnant with my first baby - I got a phone call 2 days ago to say that my HCG was raised and my PAPP-A blood test was low and my baby had a 1:25 risk of DS. This was combined with my NT which was 3.3 - at the time I had asked the sonographer whether this was too high and she said no. My partner is mixed race - Afro Caribbean and I am white so I don’t know if this makes any difference to the readings. I have a NIPT blood test next week but think I am also going to request a amnio as I feel like I need a definite answer.

I feel so sad - as I thought everything was ok as they did not contact me for 3 days - instead I heard a week later. So last weekend before getting the call I had started to tell people. I’m wondering did I do anything wrong? If it is DS will this impact my future pregnancies?

I know I will be ok because I have to be - but just hoping to get some kind words for people going through or who have been through this also?

Thank you xxx

OP posts:

isthisouting · 04/08/2021 22:42

1:19 risk here, had two NIPTs, both clear. Opted for CVS at 14 weeks (would you prefer cvs or amino?) could prob get cvs still?).

CVS confirmed no issue and it was right (DD is 3 now!).

Waiting is the worst so you have my sympathies I do understand you wanting a diagnostic and tbh I'd probably opt for that again if I had another.

isthisouting · 04/08/2021 22:43

Oh meant to say I had high HCG and low PAPP-A, NT was 2.5ish I think. age played a factor in combined results (38). How old are you OP?

Original poster

Bwin020 · 04/08/2021 23:38

Hey isthisouting thank you so much for your message - unfortunately they seem a bit slow and say that I should have the NIPT first next week (tues) which will make me nearly 15 weeks. I’m 26 years old - so thinking my BT results must have been bad enough to sway the result to quite a high risk?

OP posts:

DoctorBambino · 06/08/2021 09:07

Hi @Bwin020 sorry you're going through this, I've been there and know how stressful it can be. Do you know what your numbers were for the hcg and papp a? I was given a 1 in 5 of DS and 1 in 89 for the other two. Nipt came back low risk for all three and I was happy to accept that. The screening tests can throw up all sorts of odd results and baby can be absolutely fine. I hope it all works out for you 🙏

Mrsmujic · 12/08/2021 11:55

@Bwin020 how did your results go? I was told yesterday that I have a 1 in 23 risk of DS. I have slightly high HCG and low PAPP.A (0.16!) but NT was completely normal 1.4 ...Trying to hold out hope but curious to know the outcome for others. Wishing you all the best X

Original poster

Bwin020 · 12/08/2021 16:37

Hey @Mrsmujic, so I went for the NIPT test but I decided that I would prefer to opt for the amnio to get a definite answer. The midwife did explain that the NIPT is accurate but I think it not being a diagnostic test would leave me thinking ‘but what if?’

I have the amnio tomorrow and then the results should come back 2-3 days later. I hope everything goes ok for you too - our blood results are very similar but the NT on baby was 3.3.

Lots of love to you xx

OP posts:

HopefulRose · 09/09/2021 19:15

Hi @Bwin020, I hope you don’t mind but was wondering how you got on with amnio and how you found it? Hope it all worked out for you!

Currently going through the same thing. First pregnancy. Called on Monday to say I’m high risk 1:31 for DS with high HCG, low pappa and 3.3mm NT. Waiting for results is the worst.

Original poster

Bwin020 · 09/09/2021 19:24

@HopefulRose

Hi *@Bwin020*, I hope you don’t mind but was wondering how you got on with amnio and how you found it? Hope it all worked out for you!

Currently going through the same thing. First pregnancy. Called on Monday to say I’m high risk 1:31 for DS with high HCG, low pappa and 3.3mm NT. Waiting for results is the worst.

Hey @HopefulRose , first I hope you are ok as the wait is the worst bit even if you are able to distract yourself.

I had the amnio which was uncomfortable but I wouldn’t say painful - just a weird sensation. It was ultrasound guidance and I got to see my baby which was lovely. They try to have a look at internal structures in that appointment so look at the nasal bone, heart defects and liver and kidneys as these can often show signs of Down’s syndrome if not forming correctly. Afterwards I definitely felt a little more vulnerable around my belly and slightly sore but I think I was just more aware of things.

I found out about three days later that my baby is ok and that it is a boy!! He doesn’t have Down’s syndrome.

I hope everything goes well for you - from what I have read and heard the 12 week scan and blood tests can throw out a lot of false positives. Xxx

OP posts:

HopefulRose · 09/09/2021 19:44

Hi @Bwin020 thanks for replying so quickly and that’s brilliant news! So happy for you and how lovely that you know you’re having a little boy.

Did you have the NIPT and amnio through the NHS or privately? We’re waiting for NIPT results through the NHS and then will have cvs / amnio depending on the outcome. But I’m so impatient wondering whether to book in the others privately anyway (though probably won’t be any quicker).

Thanks so much for your kind wishes💕! It’s so nice to hear stories that end well. I hope the rest of your pregnancy is smooth and enjoyable Xox

HopefulRose · 09/09/2021 19:46

@Bwin020 do you mind sharing what your HCG level and pappa was? If you can remember it - I appreciate not everyone is as mad as me, I’ve memorised mine now 😆😢 xox

Original poster

Bwin020 · 09/09/2021 20:08

@HopefulRose No worries at all - it can feel so isolating so I completely understand you wanting to know all the details.

I didn’t have the NIPT - although I was offered it, I was not happy with the results given as a higher/lower chance rather than diagnostic. I knew that even if I had a ‘lower chance’ result, for the rest of the pregnancy I would be questioning it. So I opted directly for the amnio - I’m sure others would question my choice due to the risk of miscarriage but I just had to have a diagnostic answer. I had an amnio on the NHS - in my area if you have had a NIPT if it comes back as lower chance then you aren’t eligible for an amnio - but for many people the nipt test gives them the reassurance that they need.

My PAPPA was 0.51 and my HCG was 1.41 -They said individually the readings were not hugely abnormal but combined with the NT was probably what threw my result xxx

OP posts:

HopefulRose · 09/09/2021 20:32

@Bwin020 thank you so much. It is so isolating isn’t it? I have no one to talk to about it because I only just told people I’m pregnant but I really don’t want to worry anyone.

I totally get that and that’s completely understandable. I did consider which way round to do things, think I was in shock really so just did what I thought sounded like the quickest option. NIPT is available on the NHS where I am too then CVS/ amnio if you get a “high” result back.

Thanks for sharing. Good luck with the rest of your pregnancy. When are you due? 👶 xox

Original poster

Bwin020 · 09/09/2021 20:40

@HopefulRose absolutely - and for those 12 weeks leading up you have prepared yourself and started to consider yourself as a mum and then it feels as though the carpet is pulled from under you! It is the feeling of being in between happy but sad that threw me. That is how I felt though - I don’t want to assume it is the same for you.

Yeah definitely - my sister in law had similar results and she opted for the NIPT (luckily again came back as normal and she has a healthy 6 month old)

You too - always here if you need a chat or just to have a vent. Just remember that you are completely right to feel all the scared/worried emotions that you are possibly feeling, but also happy and sad all at the same time.

I am due on the 3rd of February! When is your due date??? Xxxxx

OP posts:

Fetchthevet · 09/09/2021 20:45

@Bwin020 congratulations on your happy news It's a really difficult thing to go through.

Original poster

Bwin020 · 09/09/2021 21:20

[quote Fetchthevet]@Bwin020 congratulations on your happy news It's a really difficult thing to go through.[/quote]
@Fetchthevet

Thank you xxx

OP posts:

HopefulRose · 09/09/2021 23:06

@Bwin020 honestly, you’ve described exactly how I’m feeling! The past twelve weeks have been a challenge enough (in a positive way) thinking about becoming a parent and trying to get through the first stage. And then this happens!

That’s really reassuring to hear about your sister-in-law, congratulations to her!

Thank you so much, that’s really kind of you. It’s majorly helped reading back through other stories and hearing from women who have been in a similar position and have come through on the other side.

Ahh how exciting! Not too long into the new year then. I’m due on March 17 (also St Patrick’s Day which will be handy as I might need a drink after this pregnancy) xox

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