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Could anyone help reassure me on these results please?

32 replies

Peonyyyy · 29/06/2024 15:49

Second baby, just got our downs/edwards/pataus screening results back and it’s low risk which is great but I am not sure what is the lowest result possible?

I am 36 and the NT measurement was 2mm.

edwards And pataus 1 in 5000
downs 1 in 3800

Papp A 0.7 MOM (I haven’t got a clue what this means)

we have been on the fence about doing NIPT for extra peace of mind as we did it for our first child even though the results were also low risk. But back then we were both working full time with a lot more disposable income, and I’d had 2 miscarriages so we were quite anxious all through the pregnancy.

we were going to do it this time but it’s £350 at our hospital (free if you get a high chance result) and in the end we decided not to do it as we could spend the money on our son/the baby and most people don’t do NIPT.

please could someone help me understand my results? how common is it for people to get a low chance result and then have a child with one of the trisomies?

thank you ❤️

OP posts:
dammit88 · 29/06/2024 15:59

So the results you have tell you how common it would be. For 5000 women with your results, one would be expected to have a baby with T13 or T18. For 3800 women with your results, 1 would be expected to have a child with T21.

To put another one, it is a 0.026% chance of DS
And a 0.02% chance of DS.

Unfortunately this screening is not a guarantee. But you have overwhelming odds of a baby not affected by those conditions.

Blueballoon90 · 29/06/2024 15:59

High risk is considered less than 1 in 150. Im not quite sure what you’re asking?

Peonyyyy · 29/06/2024 16:30

@Blueballoon90 its right there in my post: ‘Does anyone know what’s the lowest result possible?’ And ‘how common is it for people to get a low chance result and then have a child with one of the trisomies?’

if you don’t know then no need to reply, thanks x

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Peonyyyy · 29/06/2024 16:32

@dammit88 thank you, that is reassuring. It would just be good if they would put what is the ‘best’/lowest result, eg that 1 in 5000 is the best or 1 in 3800, or maybe it’s 1 in 10000. I’m not sure how much it’s affected by my age. I’ve had a Google but can’t find anything online that gives the full picture x

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Emotionalsupporthamster · 29/06/2024 16:39

I don’t think you could get a 1 in 10,000 with the standard screening, as that’s the lowest you’ll get with NIPT and that’s much more precise. Either way it means the probability is minuscule, but because it’s just a screener not a diagnostic test they can’t tell you with absolute confidence there is no chance.

How common it is to have a screening result as low as yours and still have a baby with that condition is what the probability is telling you - just 1 in 5000/ 1 in 3800.

AimeeLou84 · 29/06/2024 17:00

Hey OP. So my risks come back high risk 1 in 137 for the 3 syndromes. Anything under 1 in 150 is classed as high risk. I had the NIPT via NHS as they offer to high risk women and it come back low risk. They don’t give numbers in my practice so I don’t know what the chance was.

Peonyyyy · 29/06/2024 17:06

@AimeeLou84 ah really pleased for you that NIPT came back low x

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Chasingbaby2 · 29/06/2024 17:30

I think 1 in 5000 is as low chance as it gets. You don't give the HCG result but downs is only slightly higher than the others due to HCG to papp a being a tad higher relatively. But there is a really wide range of normal HCG so it doesn't mean very much outside of the screening algorithm. Papp a is a protein produced by the placenta, less than 0.4 is considered low and can be linked to growth issues later on. Yours is totally normal. You can be very reassured with these results. I had 1 in 76 which was terrifying at the time (baby doesn't have any syndrome) but the screening midwife said she had never seen any result at 1 in 50 or lower on the combined screen come back higher chance on the NIPT. I honestly wouldn't bother x

Peonyyyy · 30/06/2024 16:28

@Chasingbaby2 that must’ve been so worrying, glad everything has worked out for you. Have you had your baby now?

annoyingly my trust doesn’t seem to give hcg results so it’s hard to interpret the results, but as you say papp a is normal so that’s good. X

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Peonyyyy · 30/06/2024 16:43

Just saw on another thread that progesterone supplements can increase hcg, I’ve been on progesterone since I was 4 weeks due to some bleeding, could this be why? I don’t know if my hcg is high but assuming it might be as my downs risk is slightly higher x

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Peonyyyy · 05/07/2024 17:44

I’ve just got my letter with my fill results-

hcg 0.56 mom
pappa 0.70 mom
NT 2.00
CRL 63.4

t21 1 in 3800 (background chance is 1 in 271 due to age - I will be 37 when they’re born)
t13/18 less than 1 in 5000 (background chance 1 in 1830

does anyone know what the threshold for hcg? When is it too high? These results do look normal so I’m reassured but wish I knew a bit more about what I’m looking at. Thanks

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AimeeLou84 · 05/07/2024 18:18

Those numbers are based on your HCG, Pappa etc and are good. You’re only high risk if 1 in 150 or lower. Can’t remember what mine were but majority of my risk (1 in 137) was because I’m 39

Peonyyyy · 06/07/2024 07:14

Ah ok thank you @AimeeLou84 how did everything go for you?

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AimeeLou84 · 06/07/2024 07:47

Peonyyyy · 06/07/2024 07:14

Ah ok thank you @AimeeLou84 how did everything go for you?

I ended up having NIPT and it come back low risk but my practice doesn’t provide numbers after the NIPT if it’s low risk - so would have been over 1 in 150 chance

StampOnTheGround · 06/07/2024 08:06

I think the lowest result possible is 1 in 100,000 which is what I got for my first pregnancy but I was in my 20s. This time around aged 30 I imagine it would be much more like yours just because my age starts with a 3!

For context your downs result would mean there's a 0.026% chance of your baby having downs, which is super super low risk! 😊

Overthebow · 06/07/2024 08:09

pinkpetunias · 06/07/2024 08:00

1 in 5000 is the lowest risk score you can get. Section 5.3 Of this government guidance sets out the upper and lower risk scores.

It’s not, I got 1 in 16000 for mine of mine.

CheeseWisely · 06/07/2024 08:13

I was 40 and got 1 in 10,000 for T13 & T18 and 1 in 4700 for T21. We decided against NIPT at that stage.

pinkpetunias · 06/07/2024 10:54

@Overthebow @StampOnTheGround yes previously you could get those sorts of scores but the guidance has changed (although I now see that’s NHS England so you could potentially still get other scores elsewhere), that link sets out in 5.3 how results are reported: final chance result reported using lower and upper limits (1 in 5,000 and 1 in 2 respectively)

Maty34 · 06/07/2024 11:05

Overthebow · 06/07/2024 08:09

It’s not, I got 1 in 16000 for mine of mine.

They’ve recently changed it to 1:5000

Peonyyyy · 06/07/2024 19:27

Thank you so much everyone this is really helpful.

sometimes I’m like don’t bother with NIPT… then other times I still want the piece of mind. I don’t know if this is just me and my husband being risk averse or because we had miscarriages before my son and we are aware that the worst really does happen x

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Overthebow · 06/07/2024 19:30

Maty34 · 06/07/2024 11:05

They’ve recently changed it to 1:5000

I hadn’t realised! I got 1 in 5000 in my recent pregnancy so maybe that’s why.

BaconBrownSauce · 06/07/2024 19:32

Overthebow · 06/07/2024 08:09

It’s not, I got 1 in 16000 for mine of mine.

It’s changed now. The lowest risk the NHS will give is 1:5,000.

AimeeLou84 · 06/07/2024 22:30

Peonyyyy · 06/07/2024 19:27

Thank you so much everyone this is really helpful.

sometimes I’m like don’t bother with NIPT… then other times I still want the piece of mind. I don’t know if this is just me and my husband being risk averse or because we had miscarriages before my son and we are aware that the worst really does happen x

I get this totally, I’ve been totally anxious my whole pregnancy and just to try and stop my anxiety I think I’d have paid private to have NIPT anyway. Please do what would make you feel more at ease, I’ve had such a stressful pregnancy worrying about every little thing

Peonyyyy · 15/07/2024 22:14

Thank you, we’ve booked NIPT today anyway.

we ended up booking through a private company (not the hospital) as it was £40 cheaper and we’ll get to find out the sex (I’m so impatient!) with the nhs one they don’t tell you the sex.

so fingers crossed we should know about 3 weeks before our 20 week scan.

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