High Risk for Down Syndrome/Edwards-Positive Stories needed please!

(127 Posts)
MumOfMiracles Sat 20-Mar-21 09:03:22

Hi lovely Mummy's, really need encouragement today, this is my 3rd pregnancy and after a really wonderful 12 week scan seeing my sweet baby. Got a call 2 days later to say I am high risk for Downs (1 in 143 chance) and Edward's (1 in 243) For my last 2 it was 1 in over a thousand so this really came as a shock! Not only that I have low Pappa-A so am taking aspirin every night to support my placenta. Keeping all this quiet from friends and family as I don't want the pressure of keeping them posted and dealing with their reactions to the news. So feeling very overwhelmed right now emotionally and have opted to take the Iona test on Monday (NHS version of Harmony) to get a better idea of what my chances really are.

Positive stories or any words of comfort or encouragement would mean so much right now.

Thank you! xx

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SarahD19 Sat 20-Mar-21 10:55:03

Hey I had high risk results (although higher risk than this) with my most recent baby. I was high risk for Edwards and Pataus. I had CVS and Amniocentesis due to very complex results. Long story short, I know have a completely healthy baby.

A word of warning is that NIPT throws up a lot of false positives for Edwards especially. It is only actually 37% accurate at positively predicting Edwards - many people, practitioners included, are not aware of this.

If NIPT is negative then that holds quite a lot of weight as false negatives are more unusual than false positives. Good luck with everything. It can be a scary and isolating time x

MumOfMiracles Sat 20-Mar-21 12:08:40

Thank you so much for your reply Sarah, really appreciate the understanding and encouragement, thank you! x

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Mummy2O Sat 20-Mar-21 13:16:23

@MumOfMiracles I had a risk of 1 in 9 for Edward's and Patau's and 1 in 22 for Downs. I had an amniocentesis and it showed that everything was fine. My 20 week scan was also pleasantly uneventful. I am not back to being a low risk pregnancy again. I will be 38 when my son will be born, which I think factored into my results, along with my bloods and a borderline NT measurement. Every year after 35, ups your risk chances.

The NIPT test is a far better indicate than the screening test, so you will have a much better idea of what is going on after that. It shouldn't take more than 10 days (though most come back in a week) for the results.

The only advice I can give is try to distract yourself whilst you wait for the results. It sounds daft, but i would listen to podcasts whilst doing a paint by numbers picture in the evening. It is hard to sit thinking about anything else like that. However, that said feeling your feelings is important too. It is OK to feel scared and upset, just try not to let it take over.

MumOfMiracles Sat 20-Mar-21 14:22:18

Thank you so much Mummy20! Wise words there for sure! What a God send Mums net is for us Mummys hey? 💕

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MumOfMiracles Sat 20-Mar-21 14:28:16

I am 37 myself with a 2 and 1 year old so helpful to know age is a factor at the 12 week test. Hopeful for my test on Monday! Be glad to get it done then it is just a waiting game. Xx

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MumOfMiracles Sat 20-Mar-21 14:29:15

Also did either of you have low Pappa-A? Just curious x

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SarahD19 Sat 20-Mar-21 14:39:24

I had low Papp-A and HCG. Under 35 so it was the hormones alone that made me high risk. They were both really low - a fraction of what they should’ve been but I cannot remember exact figures. Hope you’re ok x

MumOfMiracles Sat 20-Mar-21 14:54:01

Great to know you went on to have a completely healthy baby! Appreciate you sharing thank you! It's so true that every pregnancy is unique no 3 of my pregnancies have been the same. Yet for the beautiful bundle you get at the end it is always worth it! xx

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MumOfMiracles Sat 20-Mar-21 14:58:36

Think more than anything it is the High Risk term that spooked me, hoping and praying though it is a false alarm and baby does just fine. 💕

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SarahD19 Sat 20-Mar-21 15:02:55

100% they are worth it. My children are different and similar in certain respects. Each so unique and loveable in their own way.

Mummy2O Sat 20-Mar-21 15:19:32

My Papp-A was 0.32 which I think is low. They never really said (or I was so dazed by the situation I didn't take it in).

MumOfMiracles Sat 20-Mar-21 15:53:16

Thank you so much both of you for sharing, feels a lonely thing to be waiting on so has helped to reach out to Mums who can relate. My Husband does much better at parking things mentally than me but has really helped knowing I'm not alone. Will keep you posted. xx

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SarahD19 Sat 20-Mar-21 18:55:58

Glad I can be a help. And if you want to PM, happy to talk. Good luck with everything! X

Mummy2O Sat 20-Mar-21 19:35:09

@MumOfMiracles I will be keeping everything crossed for you. x

Ty36 Sat 20-Mar-21 20:08:22

I was high risk with low papp-a. I had the nipt test which came back fine and I had extra growth scans etc towards the end, everything was fine though x

Blueuggboots Sat 20-Mar-21 20:11:12

I was 1:52 for Down's. My son does not have Down's. I had amnio because I wanted to be prepared.

jellybe Sat 20-Mar-21 20:54:12

Not personal experience but the actress Sally Philips has done a lot talking about her eldest who has Down's syndrome. You might find it helpful to look up her documentary and various interviews she has done (her one with scummy mummies was great as was the one she did I happy baby happy mum)

Good luck with it all OP thanks

SpiceRat Sat 20-Mar-21 20:58:21

Maybe a month or so ago I had high risk (1-89) for Edwards / Patau. Had the NIPT (Iona) and it came back low risk less than 1:10,000 for Edwards, Patau & Downs.

I’m due my 20 week scan in a few weeks, but all seems good so far. Also taking aspirin for low pappa-a.

MumOfMiracles Sat 20-Mar-21 21:03:43

Thank you so much all! Really encouraging and re assuring to read all these messages, shared them with my Husband too. Glad to say, feeling alot more relaxed than I was before I posted on here. Got my blood test Monday at 5pm, will be sent off the following day. Feel much better about the wait now as was feeling extremely anxious about it all. Got my 20 week scan booked for 4th May and praying all is well with that. My heart still swells when I look at my scan pic from Tuesday, baby looks cute as a button. Thanks again for all the support. xx

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Niconacotaco Sat 20-Mar-21 21:10:12

I was 1 in 12 for Down’s, negative on amnio.

kat0450 Sun 21-Mar-21 11:28:15

Just been through similar here - I’m 37 with 3rd baby on the way. 1:20 chance of Down Syndrome on combined screen due to high HCG levels. Opted for NIPT as accuracy very good for DS in particular and chances came back 1:100,000 for all 3 trisomies. Plus we found out we are having a boy 😁 waiting for results was the worst-we already knew we would continue with pregnancy but found the uncertainty very challenging. Will be thinking of you @MumOfMiracles as you wait x

MumOfMiracles Sun 21-Mar-21 11:54:38

Thank you for sharing Kat! That is fantastic to hear. You lovely Mums have been such a comfort and knowing I can share here what the results are is a huge help too! Love my little babe already and hopeful same as you all, that I will have a great story to share. Would love my 20 week scan to be sooner as itching to see my little one again and to know all is well in there. At least the results for Iona test come much sooner. Just got to wait to get it done tomorrow. xx

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MumOfMiracles Mon 22-Mar-21 17:25:24

Hi ladies, test all done, will be sent off to Manchester at 4pm tomorrow, the wait begins now 🙏 xx

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SarahD19 Mon 22-Mar-21 17:47:08

Good luck! 🤞 xx

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