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1/21 risk of downs

23 replies

Zippy17 · 23/11/2018 13:59

Hi guys, on Monday I had my combined results which produced risk of ds as 1/21. I’m absolutely terrified! This is an Ivf pregnancy , had vanishing twin. Iona test done Tuesday but unsure about accuracy due to the vanishing twin aspect! Nt was 2.6mm at 13 weeks , Papp-a o.6, hcg2.2. I’m 38, any experiences or common ground would be much appreciated thank

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onemoremummy · 23/11/2018 14:03

I have read that ivf and also twin pregnancies tend to have higher odds for T21, because of the raised hcg levels... your NT measurement is normal so try not too worry too much until your Iona results come back...

Lougle · 23/11/2018 14:12

In percentage terms that's 4.76%. That is still a very low percentage, isn't it? If I handed you a raffle ticket and said to you that you have a 4.76% chance of winning, you wouldn't get too excited, would you? It's 476 in 10,000 babies. Which means that the other 9,524 babies wouldn't have Downs' Syndrome.

I hope you get some further information soon, and that you are supported while you wait.

Zippy17 · 23/11/2018 14:27

Yea I’ve heard that about the Ivf and twin pg. midwife claims it has no bearing, but who really knows. Thankyou for your replies , it’s such a worrying time !

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Pandamodium · 23/11/2018 14:33

My mam had those odds when she had my younger sister aged 40. She had the amnio (? I think that's what its called needle in belly test) that was negative DSis is 18 now.

How worrying for you Flowers sorry I know that's not much help, just one experience.

Zippy17 · 23/11/2018 16:01

Pandämonium , Thankyou, every positive experience helps!! Xx

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Petitprince · 10/12/2018 23:14

The hormones in your system from ivf can give a higher reading on the blood tests. Ours was 1:7 and I'd had high doses of meds before egg collection, which I think played a part. Our results came back negative and we now have a healthy 2 year old. Good luck.

Zippy17 · 11/12/2018 09:12

That’s really good! Unfortunately, my nipt results came back high risk for downs. Had an Amnio last Wednesday and obstetrician said to expect the worst.

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Petitprince · 11/12/2018 09:45

Ours also said to expect the worst from amnio too, and were very pessimistic all the way through (suggested booking a date for TFMR in case results showed T21).

We had to really push back and say that we would keep a healthy baby with downs syndrome, but we wanted the tests so we were prepared.

I was an older mum and aware that that was possibly our only chance for a baby. I'd have wanted a baby with downs syndrome over no baby at all, but I found the hospital very negative.

As it was, the results came back all clear. But I'll never forget how hard that week waiting was. I have my fingers crossed for you.

Pandamodium · 11/12/2018 10:30

Oh zippy I am sorry to hear that Thanks

Hope you have some RL support.

Zippy17 · 11/12/2018 14:07

I just had results which confirm t21. I have made the difficult decision to discontinue the pregnancy. You’re absolutely right, I’ve never experienced such a hellish time. I’ve been through miscarriages and an ectopic but this has been awful.! Thank you for your kind messages.

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Pandamodium · 11/12/2018 14:35

I'm so sorry I can't imagine how hard that must be. I was so hoping for a different outcome for you Thanks

Zippy17 · 11/12/2018 14:46

Thank you! I was too. I’m off work for a bit now , it’s very hard and don’t think I want to continue with the pursuit of another baby , it’s too draining and heartbreaking.

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Pandamodium · 11/12/2018 17:07

I said the same when my first little boy was born very early and died, I took two years out before but I did try again successfully.

After he died I just had to take it day by day sometimes by the hour and it was hard but I did come out the other side. It won't be this painful forever I promise.

Zippy17 · 11/12/2018 17:19

That’s awful pandamodium, that must have been horrendous for you to have given birth and then loose him! So sorry ! Yes I will take it day by day, now is not the time to make a decision. Xx

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KTD27 · 11/12/2018 17:21

Ahh zippy I’m so sorry. I had a TMFR last year with my little girl at 17 weeks due tonedwards syndrome. It was utterly horrendous.
Allow yourself time to grieve and be as kind to yourself as you can be. It’s just the most awful time of my life and I wouldn’t wish it on anyone.
Things that helped me - for what it’s worth - we named our baby and planted a tree in the national forest in her memory.
You don’t need to make decisions about trying again yet. You might not and that’s ok. Or you might
Massive love to all of you xx

Zippy17 · 11/12/2018 18:17

Thankyou , and so sorry for your loss. That’s nice that you burried her and planted a tree, I thought about doing that but I don’t think I could. I have opted for surgical as I don’t think I could go through with a medical. Every one is different I suppose. It’s such a shame that women have to go through this! Xx

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Spoilingthem · 11/12/2018 18:20

Pretty similar results to me, plus same age. My risk was 1 in 6, IONA came back negative x it was the most stressful period of my life Flowers

Spoilingthem · 11/12/2018 18:22

I'm so sorry, I posted before seeing your more recent posts x

Zippy17 · 11/12/2018 20:02

Don’t worry it’s ok, so glad yours was negative! If I was to repeat this process I think I would go straight for the Iona , you get a more conclusive answer instead of these extremely frightening odds from the screening tests! Xx

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KTD27 · 11/12/2018 20:48

No we did it surgically too. I couldn’t face giving birth so we didn’t bury her. I knew the sex from the NIPT and that helped me I think.
The procedure itself was fine. The clinic was very gentle and knew I was there ending a wanted pregnancy. It was extremely difficult but I’m glad I had the option to do it the way I did it

Zippy17 · 11/12/2018 20:55

Oh right, yes surgical seems the lesser of two evils to me, a medical would be horrendous I think. A lovely idea to plant the tree, I might think of doing something similar too. Xx

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SparkyBlue · 11/12/2018 21:14

@Zippy17 I am so sorry you are going through this.

Zippy17 · 12/12/2018 18:17

Thankyou x

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