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Antenatal tests

High risk for Down - help and positive stories please!

15 replies

Katie1109 · 25/03/2021 16:40

Hello. I have just had a call and was told my risk for Downs Syndrome is 1/93. Edwards and Pateu is ok. I’m 30, my NT measured 1.5. Midwife said my PAPP-A is 0.41 and my Bhcg is 3.3, no family history of Downs. I have absolutely no clue what these numbers mean. I’m so upset I cannot think clearly. I opted for NIPT but have to wait till Monday and then 5-6 working days for results. I had 2 early miscarriages in the past so did not want the invasive testing. Any positive stories with these kind of numbers?

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lizardosis · 25/03/2021 16:42

I had 1 in 3 to have downs. I had amnio and normal chromosomes.

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Katie1109 · 25/03/2021 16:44

@lizardosis wow...why the hell are they not using NIPT as standard? Why cause people so much upset?

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lizardosis · 25/03/2021 16:48

That was eight years ago. I was only offered amnio.

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Dogsandbabies · 25/03/2021 16:57

I recently got 1/56 for Down syndrome. I opted for CVS and got the all clear two days later. I also had previous miscarriages but I just wanted to be sure. I am now 20 weeks.

I know it is easier said than done but you need to keep reminding yourself that the odds are in your favour. 92 of the 93 women on your situation will get a good result. Good luck.

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gonnabeok · 25/03/2021 16:57

I was 1 in 30 for Downs. My daughter was fine.

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minniemoocher · 25/03/2021 17:01

I will put it the other way around, even if a baby has downs they can have a good quality of life, and with the correct support and education, live independently. My friends dd is now away at college, cooks for herself and is making documentaries (first film festival coming up!)

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SarahD19 · 25/03/2021 18:06

@lizardosis whilst NIPT has its place, it is also misused and I know of many people who have had their lives basically thrown into turmoil by these tests unnecessarily. If used properly it is great, however it is by no means equivalent to amniocentesis.

Also the miscarriage risk associated with amniocentesis is wildly overstated according to pretty much any recent research, if this reassures anyone obgyn.onlinelibrary.wiley.com/doi/full/10.1002/uog.14636

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Katie1109 · 15/04/2021 16:00

Just wanted to update. I have received my results and they came back as lowest possible risk for all 3 trisomies 🥰 thank you for the support x

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Jasz1701 · 15/04/2021 18:15

Hi mommys plz pour in your experience.Im 32yrs and 13+2 weeks NT came back 3.4mm blood work show 1:215 risk. Was asked to CVS, did that yesterday now the wait is killing me. I have conceived after a try of 2 yrs can't gety mind of all the negatives.Diving in all possible google pages. Please let me know if anyone faced the same.

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FanPanCan · 15/04/2021 18:25

Glad your chromosomes are all good OP! I was 1:32 with dd, had a CVS (I won't lie, that was awful) she's now 8 with 46XX. Good luck.

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JaiPow · 17/04/2021 13:28

@Jasz1701
I’m 34 with 1:4 chance of t21,t18,t13.
PAPP-A .24
BHCG 6.84
NT normal

I did both amnio and NIPT received both results yesterday, and baby is normal.

Keeping my fingers crossed for you.

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Jasz1701 · 18/04/2021 10:21

@JaiPow I'm so glad you got positive results. If you understand the hormone levels my
BHCG 1.2
PAPP A 0.94
Results of CVS expected tomorrow, keeping my fingers crossed 🤞🤞🤞

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JaiPow · 18/04/2021 13:43

@Jasz1701
I can only think that the slightly higher NT and the slightly low PAPP-A would have given you a higher probability, even though your likelihood is still quite low.

Typically the BHCG is high with DS where yours is not.

Keeping my fingers crossed for you.

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Jasz1701 · 18/04/2021 16:54

@JaiPow Thank you dear the hope you giving me is really helping me keep up

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Jasz1701 · 19/04/2021 11:22

Update
CVS reports came in all clear!!!! I'm so thankful to God Smile

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