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Antenatal tests

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Original poster

1:23 risk for Down's Syndrome

17 replies

Ljd401 · 15/02/2015 20:45

I posted previously and realised I put that I had low Papp-a and low HCG. I meant to put that I had low Papp-a and high HCG.
Papp-a was 0.36
HCG was 2.6
Nuchal fold was 2.4mm

We went to the Fetal medical centre to have a detailed scan. No other markets were seen for Downs. Combining this with my bloods it gave us a new risk of 1:400. I don't however hold out much hope because I know that the bloods are a really big indicator of Down's and that a good scan doesn't necessarily mean anything.
We should get our Panorama test back tomorrow or possibly Tues or even Wednesday. I need to know now as it is eating away at me and I can't cope :-(

OP posts:

CrispyFB · 16/02/2015 11:31

Bloodwork is no more an indicator than the nuchal fold. This is anecdotal of course, but I had a 1 in 34 with DC3 and waited it out back in 2010 because Harmony wasn't available then. Like you, my risk was all in the bloodwork and not really in the neck measurement. During that time I saw a lot of results on various forums and it was extremely unusual for a positive result to come back with bloodwork being the only indicator. I think I saw one in the four months I waited (went for an early "safe" amnio at 32 weeks as I needed to know before the birth either way) All the other who ended up being positive with bad bloodwork also had a raised nuchal fold. Whilst 2.4mm is not low, it's not above the cut off.

If the FMC says 1 in 400 I would trust that over an NHS result - after all, the FMC invented the nuchal fold test in the first place!

DC3 had typical chromosomes, as did DC4 who was a 1 in 5 a few years later, thankfully Harmony was available then!

I hope you get your results quickly!! The waiting is horrendous.

KittyandTeal · 16/02/2015 16:43

I'd be quietly encouraged if fmc have given you a new risk 'score' and seen no soft markers.

I'm sure once you've been classes as 'high risk' the worry never goes away.

I know how awful the waiting period is. Tbh I'd say the waiting was almost the worst bit for us (we got bad news)

I'm really hoping you get your results soon and that they're negative.

ChewyGiraffe · 16/02/2015 17:11

I hope you can be reassured by the FMC scan?

When I was pg, the NHS scan gave my risk of downs syndrome as 1:50, FMC gave me 1:625, then the Harmony Test came back as 1:10,000. DD doesn't have downs (and plus is otherwise perfectly healthy).

From memory, the FMC scan is a more detailed calculation than the NHS model. My NHS scan used bloods, age and nuchal measurement in the calculation. I'm fairly sure the FMC used those, PLUS three other soft markers: presence of nasal bone, tricuspid regurgitation (blood flow in tricuspid valve in heart), ductus venosus. That's why their calculated risk is different - and stands to reason, is likely to be the more accurate calculation for you.

But even on the NHS screen, I would still (in my entirely non-medically qualified) humble opinion, take comfort from the reassuring nuchal measurement.

Is Panorama like the Harmony Test? If so, deep breath, hang on in there and FX you'll have good news in a couple of days.

daluze · 16/02/2015 23:16

As said above, the risks at FMC are more accurate, because they take into account more markers into account. Only few top hospital in NHS do the same.
Hope your Panorama results don't take long and reassure you completely!

Original poster

Ljd401 · 16/02/2015 23:34

Thank you so much for your support girls. Panorama (just like Harmony) came back as 1:10,000 risk. I am absolutely thrilled :-) I can't quite believe it!xx

OP posts:

KittyandTeal · 17/02/2015 09:31

Oh wow, what fantastic news.

What a nasty scare for you but I'm so happy that your adjusted risk has come back so low (pretty non existent)

I hope you can go on to enjoy your pregnancy and baby stress free x

Original poster

Ljd401 · 17/02/2015 09:38

Thank you so much. Got to have regular growth scans due to low Papp-a score now xx

OP posts:

KittyandTeal · 17/02/2015 16:27

I'm sure you'll be fine. Although not entirely worry free then.

From what I understand (I was originally having extra growth scans for low papp a before they picked up the T18) it is only a tenuous link so probably nothing to worry about. It might be worth asking about baby dose aspirin, I was given that, again when they thought my issues with papp a related.

CrispyFB · 17/02/2015 18:52

Glad to hear you got the result you wanted! That peace of mind is priceless.

I've known quite a few people including myself with low PAPP-A - a lot lower than yours (0.19MoM or thereabouts) Mine was fine, another friend was fine, and another one thanks to the growth scan at 28 weeks picked up an issue and baby was delivered safely 34-35 weeks. Apparently at 0.19MoM there's about a 1 in 5 chance of there being any sort of growth restriction so you should be fine!

daluze · 17/02/2015 20:35

Great news! Hope the rest of the pregnancy is uneventful, and use the extra scans yo enjoy seeing your baby! I had scans every 2 weeks during my first pregnancy due to preterm birth risk (funnily enough, DS came 11 days after due date and even induction could not force him out!), and actually it was nice to see him often and see him changing and growing. Good luck with everything!

Original poster

Ljd401 · 07/03/2015 13:28

Thank you everyone. :-) 20 week scan in 3 weeks xx

OP posts:

Original poster

Ljd401 · 16/03/2015 19:03

Not coping well. Didn't realise that the Panorama test doesn't pick up mosaic downs :-( now thinking I should have had the amnio xx

OP posts:

SaggyAndLucy · 19/03/2015 23:45

can you speak to the hospital and ask for an amnio now?

SaggyAndLucy · 19/03/2015 23:46

I'm sure you're fine, but you obviously need to put your mind to rest.

LAURAPAX · 31/01/2025 15:55

Realise this is an old thread how did you get on OP @Ljd401 xx

Original poster

Ljd401 · 01/02/2025 01:37

LAURAPAX · 31/01/2025 15:55

Realise this is an old thread how did you get on OP @Ljd401 xx

Oh wow, this is an old thread. My son was born absolutely fine. Horrendous birth though and he does have ADHD but no Down’s Syndrome.
I do hope all is ok with your pregnancy. Here if you need to ask any questions xx

OP posts:

LAURAPAX · 01/02/2025 17:45

Hi @Ljd401 thanks so much for getting back to me. Glad that things worked out although must be hard with the birth and ADHD. Did you go with the animo in the end? I had a low risk score on NHS but it was actually 1.280 which now at 36 weeks pregnant I realise isn’t actually that low and am crapping myself that something will be wrong - this all came about as I’m at the lower percentile end, flicking between 7-10th percentile. It’s my first after 3 years trying, two miscarriages and failed ivf so I was just so happy to get through the 12 / 20 week scans with no major concerns that this didn’t even cross my mind until recently. I’m struggling with my emotions and anxiety atm : ( xxx

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