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Original poster

High down syndrome risk after combined test

50 replies

trace1105 · 18/03/2017 11:33

Hi, I'm 42 and 14.4 weeks pregnant with my third child which we consider to be our miracle baby as my partner was told he couldn't have children and my other 2 are 17 and 15 to my previous partner. I had a high nt measurement at a private scan at 13 weeks which I had to book after a small bleed as the NHS couldn't scan me for 4 days. I then had my NHS 12 week scan and measured nt 2.9 which along with my combined bloods gave me a 1 in 7 risk. I'm terrified of having the amnio so we opted for the Iona test which cost us £300. We are still awaiting the results but the fetal medicine midwife called from the NHS on Thursday to tell me that they had relooked at my scan and they thought the nt measurement was higher than the 2.9 which we were told and therefore my risk was higher than 1 in 7. I know this won't affect the iona result but I am absolutely terrified, I feel like all of my insides are shaking all the time, I can't sleep and I'm absolutely petrified we are going to get a bad result. Is anyone else in the same situation? Many thanks for your time to read this post x

OP posts:
AHedgehogCanNeverBeBuggered · 19/03/2017 17:53

if you dont want negative comments dont post on mumsnet

Seriously april, you think this is the moment? Hmm A little compassion goes a long way.

OP I'm praying for you and your family, I hope it all works out well for you. Flowers

Singingforsanity · 19/03/2017 20:13

Didn't mean my earlier post to sway your choice if you get a positive result, just to provide reassurance if you'd already made that choice. Only you and your partner can know what the best decision for your family is. Wishing you the best of luck with this.

Donsoftheworld · 19/03/2017 21:17

Really april? It's nothing to do with you or your child.

TheBananaStand · 19/03/2017 22:52

Hi Trace, I'm so very sorry you're going through such an awfully worrying time. I think you've been treated very unfairly on this thread.

I was in your position this time last year, waiting for the results of a harmony test after receiving a combined test result of 1:13 for T21. Our result came back as positive for T21 and we made the decision to end the pregnancy. I hope so much that the outcome is a happier one for you but please don't feel you have to justify or defend the decision that you make to anyone. As other posters have said, you know what is best for you and your family.

You may receive more helpful advice on the antenatal tests/results board here on mumsnet, and ARC are a fantastic charity, with a lot of information and advice on their website and a helpline which was a tremendous help to me both while we were waiting for results and after. Their website is: www.arc-uk.org

Wishing you the very best Flowers

Seahawk80 · 20/03/2017 20:26

Thinking of you today Flowers

SuziePink · 20/03/2017 23:10

I'm 29 and had an NT of 3.6mm at 12+5 weeks. My odds came back as 1 in 35. I had the IONA test and it came back as good news. I completely empathise with you as it was a very difficult couple of weeks between the scan and getting the test results. I knew it would be a hard decision but the thought of taking care of a disabled child on my own meant I would have seriously consisted having a termination if the test had been positive.

If I have any more children I'll be refusing the combined test and having IONA straight off as it caused me so much worry. The false positive rate for the NHS test is high. I found the best thing was just to use distraction therapy to take my mind off it the best I could. Cooking, baking, going for walks... it all really helped.

Original poster
trace1105 · 21/03/2017 08:16

Thank you everyone for your lovely thoughts and personal stories, it does help to know I'm not the only one going through this as it feels sooo lonely at the time. I still have no results so I'm hoping and praying that it's today as I don't think I can take much more anxiety. Thanks again for taking the time to read and comment on my post x

OP posts:
MollyHuaCha · 21/03/2017 08:25

Thinking of you

Original poster
trace1105 · 21/03/2017 15:22

Just had a call from the midwife who has informed me they couldn't get enough baby dna from the first sample so they are retesting with the 2nd sample. If they can't get enough from that will need another blood test which means another week of waiting 😢 x I'm certainly being pushed to my limits that's for sure x

OP posts:
BlytheofWindyWillows · 21/03/2017 15:31

Trace, I know from experience how difficult this is. I'm currently 22 weeks and was given 1:5 odds after the screening. We had a CVS and then due to an anomaly with the results I had to have an amnio and a further wait. In the end our results were clear but the wait was awful. I have my fingers crossed for you xx

Seahawk80 · 21/03/2017 18:16

So sorry to hear that trace I know you must be so desperate for an answer x

Original poster
trace1105 · 22/03/2017 12:29

So the results are kinda in from the Iona test. I feel very let down by it having paid for a test which we were let to believe gave a 99% result. They said they didn't have a great deal of baby dna and can't tell the sex of the baby but they still reckon it's a high chance of downs, well approx 89%. The fetal medicine midwife isnt happy with the result and has suggested the amnio tomorrow so that's what we're doing then another weekend of torture to know for sure before having to make our decision. To top it all we've found out today my mum has parkinsons so it's a doubly upsetting time 😣 x

OP posts:
wonderwoo · 22/03/2017 12:47

Flowers oh OP, what an awful day for you. The not knowing is so hard and so worrying. And sorry to hear that about your mum.

Good luck with the amnio tomorrow. Try to take it a day at a time.

Original poster
trace1105 · 22/03/2017 13:33

Thank you wonderwoo x at this point I don't feel like I have much choice but to just deal with things one day at a time xx

OP posts:
TwitterQueen1 · 22/03/2017 13:57

I had amnios with all 3 of mine, even as a mere youngster of mid-late 30s. In your place i would do exactly as you are doing OP. Best wishes to you and your mum.

Lemondrop09 · 22/03/2017 14:15

I'm sorry your going through such a stressful time SadFlowers

Seahawk80 · 22/03/2017 15:21

So sorry trace what an awful day. Thinking of you Flowers

wonderwoo · 22/03/2017 15:50

trace sometimes it's all you can do. Try and look after yourself.

wonderwoo · 24/03/2017 03:07

trace I hope your amnio went as well as possible yesterday. How are you feeling? Hope you don't have to wait too long for the results. Flowers

SuperBeagle · 24/03/2017 03:12

because you are saying that if the baby is not perfect you dont want it to be born which deeply offends those of us with a less than perfect child

You just called your own child "less than perfect", so pipe down.

And the OP has said (and implied) nothing of the sort. She has talked about her age in relation to the diagnoses of a lifelong disability. That is sensible.

So sorry, OP. I hope you're looking after yourself. Flowers

coffeemachine · 24/03/2017 07:15

and the OP has said (and implied) nothing of the sort. She has talked about her age in relation to the diagnoses of a lifelong disability. That is sensible.

it is. and it isnt. A lot of disabilities cannot be detected in any antenatal test. so even if the OP will be having a clear amnio, it does got guarantee a child that doesn't have severe and and complex disabilities. I speak from very personal experience.

DalaHorse · 24/03/2017 07:26

Hope all works out well for you OP x

AHedgehogCanNeverBeBuggered · 24/03/2017 08:37

Flowers for you trace, I really hope everything works out ok.

MangoSplit · 24/03/2017 12:50

What a tough time for you OP Flowers

NewPuppyMum · 24/03/2017 12:55

The private test place sounds like they need lessons in compassion.

I'm so sorry to hear about your mum.

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