Very worried about these results

(19 Posts)
theonewithnousername Fri 30-Oct-20 15:18:24

I'm feeling in shock this morning. After everything that's gone on it just feels like what else can happen..

I had the blood tests done on Wednesday for screening. They rang me this morning and said Down syndrome is low. Trisomy 13/18 is high 1 in 11.

And my papp-a is low although they didn't give me a number. I'm currently taking 150mg daily aspirin anyway due to pre eclampsia in my last pregnancy and a high bmi.

I'm waiting for the specialist foetal medicine centre to call me with an appointment for cvs.

Has anybody had anything similar? Similar odds? I'm driving my self crazy googling etc and searched the topics here but not finding much.
I wasn't expecting this 😢 x

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KinderWild Fri 30-Oct-20 17:02:12

Hi - I haven't had similar odds but my sister had similar in her pregnancy. Her pappa was low and her HCG (think that's the other one) was high.
Have you considered having a harmony test? Is this something your hospital offers?

theonewithnousername Fri 30-Oct-20 17:18:12

They didn't mention a harmony test, just cvs. It's not being done at my hospital I'm being sent to the specialist centre for foetal medicine. They just called me and it's for Monday and 12 and then a 2/3 day wait for results.

I feel ill. What happened with your sister if you don't mind me asking?

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theonewithnousername Fri 30-Oct-20 17:19:04

Sorry @KinderWild forgot to tag you in my last reply above. Thanks for your response 😊

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KinderWild Fri 30-Oct-20 17:29:43

My sister had the harmony and it came back as very low risk. She opted to have the harmony privately over an amino (because of covid they couldn't fit her in for a CVS) because of the miscarriage risk with the invasive test. Baby was born last week and is fine.
She was very worried when she had the results. The combined test odds can be thrown out by things like age or the bloods being higher or lower than expected.
Not sure where you are but the harmony is available on the NHS. It isn't a diagnostic test it is another screening test, albeit more accurate than the combined test of nuchal, age and blood results.
I hope all is well for you. Xx

theonewithnousername Fri 30-Oct-20 17:44:05

@KinderWild ahh that's brilliant news 😊
I'm going to call the midwife now and ask although doubt they'll reply to me now

Thanks again for the reply.
I can't stop crying I just want the baby to be ok this is awful xx

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SoloMummy Fri 30-Oct-20 18:29:24

I paid for a private harmony.

Look at Harley St. Not as ott cost wise as you'd think, but great knowledgeable professionals. Top of the field. Not invasive.

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Meomeomeo Fri 30-Oct-20 19:09:46

Harmony is not available everywhere on NHS fyi. If you are doing Harmony, I highly recommend Fetal Medicine centre on Harley street. If the test comes back with issue, they will do further testing for free.
Another test you could also look at is Panorama, which is more accurate in Trisomy 13/18.

theonewithnousername Fri 30-Oct-20 19:19:42

I live in the north east so don't think Harley street is practical fir me, but really appreciate the advice.

They didn't even mention harmony test just straight to suggesting cvs. It doesn't look good does it?

Has anyone been given these odds before?

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Fearne18 Fri 30-Oct-20 19:24:54

Will you be going to the RVI hospital? They have a very good reputation. A friend had a CVS there recently. You would have to pay for Harmony test I think that’s why they recommend going for CVS.
Fingers crossed for a normal result for you and a happy pregnancy.

theonewithnousername Fri 30-Oct-20 19:44:22

@Fearne18
Yes going to the RVI. Thanks for that it's reassuring I just wish I could go now!

😊 xx

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TheDaydreamBelievers Fri 30-Oct-20 20:07:36

I know its very scary @theonewithnousername but remember that 10/11 people who are told the same as you will have a baby that does NOT have those conditions. It's also not uncommon for the combined to show a higher risk then the harmony to say it's fine. I hope further tests show no issues x

theonewithnousername Fri 30-Oct-20 20:11:26

Thank you @TheDaydreamBelievers

Trying to think positively it was just the last thing I expected.

🤞🏼🤞🏼

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ChampooPapi Fri 30-Oct-20 21:56:52

@theonewithnousername if they've recommended and booked your CVS, which is 100 percent diagnostic, I really wouldnt go for a harmony which you will have to pay for and although is very accurate, it is not diagnostic, it will not give you a 100 percent answer. Good luck, and the miscarriage risk is incredibly low, the stats are skewed by covering the last 20 years I think, so actually now it's a very low chance anything sinister will happen. And you need a 100 percent answer on that triosomy, the nipt/harmony is lower percentage of accuracy for those particular conditions. Its most effective for down syndrome detection which you arnt really being tested for.

All the best to you

theonewithnousername Tue 03-Nov-20 20:44:19

Just an update for anyone in a similar situation,

The staff at the RVI were unbelievable. They are amazing and deserve all the recognition in the world. They were so lovely reassuring and calming during what was the worst time of my life.

I am incredibly blessed to say that my results came back clear, and I'm having a baby girl 💗

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KinderWild Tue 03-Nov-20 22:06:39

Congratulations @theonewithnousername! Fantastic news. And lovely to hear you were so well cared for. X

KinderWild Tue 03-Nov-20 22:10:04

Congratulations @theonewithnousername! Fantastic news. And lovely to hear you were so well cared for. X

AntiHop Tue 03-Nov-20 22:12:13

Wonderful xx

theonewithnousername Tue 03-Nov-20 22:17:28

Thank you all 🥰

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