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Antenatal tests

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Original poster

High risk downs Iona test

8 replies

Sim186 · 13/05/2017 18:07

Hi, I have had my twelve week scan and bloods have come back positive for high risk downs.
It is the hardest thing I have come against so far! I am 31 and had a result of 1:32.
After listening to the choices myself and partner decided to go for the Iona blood test. I am going out of my mind with worry and am struggling to get on with day to day life. We will not find out results until Friday and would really like to hear from anyone who has gone through a similar experience, and also if anyone has experience of the iona test as it doesn't seem that common yet? Harmony is mentioned a lot more.
Any advice, experience would be greatly appreciated!

OP posts:

elio · 16/05/2017 19:14

I didn't have a nipt test but I am 31 and have come back high risk 1:18 and 1:79 respectively for downs. I opted for CVS both times and came back all clear. Have one healthy 20 month old and currently pregnant. The odds are still very much in your favour. X

KTD27 · 16/05/2017 20:00

I had the SAFE test which is run by Iona. The results came quickly but in the end left me more confused. I was very low risk for T21/T13 1:1000,000 but with T18 they classed be as high risk with 1:15. I'm very confused still as to what they found - the way I thought it worked was that if they found abnormal cells you'd get a risk which was more like 90-95% instead of my high risk 7%.
In the end I've had to have a CVS and will possibly need an amnio too. I would still recommend them as frankly my NHS dual screening test wasn't high enough to warrant invasive testing so could have missed something completely.
It's not the way it usually goes - you have a high risk NHS test and the IONA/ Harmony / SAFE will reduce it to a low risk. But I guess it has to happen the other way for some of us. I sincerely hope it isn't you and that your results come back fine.

Original poster

Sim186 · 16/05/2017 20:01

Thank you Elio, I really do hope so. The waiting is driving me mad I have never been so worried before. It's our first and already have had a few scares such as eptopic and have strep b so would be so thankful if this could come back low risk and all clear! Everyone says enjoy pregnancy, I would love to meet these people!

OP posts:

MintyVixxxx · 17/05/2017 10:57

Hi op. Please see attached, a high NT story with positive ending, I had the Iona NIPT. I wouldn't usually screenshot but jus feeding so please excuse my quick post. Will be back later x x

Original poster

Sim186 · 17/05/2017 17:50

Thank you minty, I like the positive posts! Gives me hope! I was kind of hoping I would get the call today, Friday is so long away. Will have been 7 days since I was told I am high risk tomorrow and the wait is awful! X

OP posts:

IlJ4 · 03/04/2020 14:03

I have recently had my screening tests at 12 weeks and today I have found out my Downs syndrome risk is high at 1:30. My Edward's and Pataus has come back as 1:140. I am torn between having the CVS test or the Iona screening. I can see some of you have had similar decisions to make with similar risk factors so I was wondering how you all got on after making your decision?
I am also brand new to Mumsnet so please bear with me... Thanks

Liveforholidays · 03/04/2020 14:59

Hi, I had a 1 in 13 chance on the NHS combined screening just before Christmas. I knew very, very little about what to do next but knew at the time that I didn't want to risk an amnio (we were too late to have cvs). The nipt seemed like a good option at the time due to the nuchal measurement being within normal range and we had the lucina nipt done at Birmingham women's. My age (40 at EDD plus slightly low papp a and slightly high hcg) pushed my risk up massively. Two weeks later the results came back as' highly unlikely '. It was a very, very scary time. Thankfully the 20 weeks and 28 weeks growth scan have come back clear and I'm now 31 weeks. I am a worrier however and almost wish I'd had the amnio now for complete peace of mind. I can't seem to shake the feeling that there may be something else wrong that the NIPT couldn't have picked up. If I could turn back time I'd have had the amnio for the certainty that everything is ok. At the time however the thought of risking losing a healthy baby through an invasive test was just too much to contemplate.

IlJ4 · 03/04/2020 17:45

Liveforholidays Thank you for your reply. I too have my reservations about any invasive testing due to the risks involved, however, like you, I am a worrier and would like to know one way or another. On the other hand, I am very much of the opinion, whatever will be, will be. It was just such a shock hearing the 1:30 result this morning but knowing there are others that have had similar results and gone on to have babies with no complications is more comforting. I also hear the invasive tests have progressed significantly in the last few years too.
I wish you every luck with the birth of your baby and thank you for the advice. It is comforting to know that the first result isn't always what you need to focus on and further results can bring more positive news.

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