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High risk

241 replies

JulieC1981 · 14/01/2020 18:04

I have been told I'm in a high risk for down syndrome.

I have to go back on Thursday for the next blood test.

I'm 38 years old and nearly 18 weeks. So nervous and scared about the results and next steps!

OP posts:
Blizy · 22/01/2020 18:37

Wonderful news JulieC1981 I bet your relief is palpable! So, so pleased for you. X

jmm499 · 22/01/2020 20:03

This is fantastic news!

@JulieC1981 many, many congratulations.

Thinking of all awaiting Harmony results - I had the same wait over the Christmas period and it is excruciating. Sending you lots of strength and positive vibes that you get the best news possible xxx

Missdrifter · 23/01/2020 17:13

Hi ladies. Results are in...... I am low risk!! Literally over the moon, the poor midwife couldn’t get a word in on the phone and I got her to email the results over too encase I imagined them.

Now worried that the stress could have caused harm to the baby? Is that an actual thing though?

Thank you so much for all of the support on here x

JulieC1981 · 23/01/2020 17:34

That's wonderful news! So pleased for you. And breathe :-)

I thought the same, but I'm sure if we now try and relax and enjoy the pregnancy the babies will be fine xx

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Johnson10 · 23/01/2020 17:47

I’m so happy for you guys!!

Dont worry I was panicking the stuff would effect the baby but 16w midwife appt was fine, nice little heart beat & now lots of movement. So everything will be fine. Please don’t worry.
Did you have a chance to find out the sex of the baby with your NIPT test? X

Blizy · 23/01/2020 17:55

Fab news Missdrifter!
I'm still waiting 😭😭😭

Missdrifter · 23/01/2020 17:57

Thank you ladies. It’s just a massive relief, I feel like I have won the lottery. Good luck to those still waiting and I am keeping everything crossed for you. X

JulieC1981 · 23/01/2020 18:48

Blizy, I'm so sorry that your still waiting. Ten days will take it to tomorrow so I pray you'll hear tomorrow x

I don't think the NHS in Wales test for the sex of the baby, it wasn't mentioned to us x

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Missdrifter · 23/01/2020 19:32

Gosh I am so sorry that you are still waiting for the results. Let’s hope they arrive tomorrow, I have a good feeling for you that everything is going to be just fine.

Blizy · 24/01/2020 07:40

I got an email, the test failed for the second time. I've been offered. Third attempt, I don't know what to do. I'm so deflated and sad.

Al82 · 24/01/2020 08:08

Morning, ice just seen this thread.
So pleased you got low risk results back.

Blitzy I was told I was high risk so went for a harmony test. It failed twice for me too, I was offered it a third time but was told it was likely to not work again.
The NHS offered us the amnio but we decided the risks from that weren't worth it.
The rest of the pregnancy was quite stressful as we still didnt know what to expect.
Sorry you are going through this too, it's such an anxious time when all you want is to be enjoying your pregnancy.

Blizy · 24/01/2020 08:57

AI82 thanks for replying. We're
You given a reason for the failed attempts? I have a BMI of 33, I'm wondering if that's a factor. Can I ask if everyone was ok with your baby? Were you given extra scans and appointments?

JulieC1981 · 24/01/2020 12:32

Blizy, I'm so sorry they were unable to get a result.
Did they say BMI may effect the ability to get a result as mine is higher than yours.

Have the offered you the amino instead? I appreciate this is the invasive tests with it's own risks.
Not being able to get an answer must be awful x

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Blizy · 24/01/2020 13:15

They didn't mention BMI, but I've been googling...a lot!
I don't want any invasive tests, so I guess I need to watch and wait.

Missdrifter · 24/01/2020 16:45

I am am sorry that you had another failed attempt at the Harmony test. You must feel so disheartened and I am gutted for you because the not knowing is just so hard. Can you book in for another scan with the consultant? Mine was quite reassuring as they noted nose bone etc and couldn’t see any soft markers?

Blizy · 24/01/2020 18:28

I have an appointment with the consultant on the 3rd feb. I am utterly devastated. I keep crying today, I really don't think I'd be this upset if I was told the baby does have Down syndrome. I just want to know, my firstborn has DS was diagnosed during her post-mortem (she was stillborn at 41 weeks) my main fear is history repeating itself.

Al82 · 24/01/2020 18:58

Sorry I thought I had replied earlier but it obviously didnt post....

We weren't given any reason for the 2 failed tests. Just that it doesnt always work for some people. We did get a partial refund but we really would have just preferred answers!
TNhs offered us the amnio but the later on in pregnancy you get there are other risks so we decided against it.
BMI wasnt mentioned....

I had low PAPP A so we were given extra scans and appointments based on that.

My baby was born with no problems at all.
So much stress for nothing!
It's so hard though, I was anxious throughout my whole pregnancy and looking back wish I had been able to enjoy it.

I'm sure history isnt repeating itself, you will probably feel very anxious right up until you have your baby in your arms.

Try and keep positive and see what the consultant suggests on the 3rd.

Blizy · 24/01/2020 19:14

AI82 I too have low Papp a. My risk
Ratio is 1:6
What was yours? I'm hoping the risk numbers are generated due to my history.
Papp a being low was the only issue, my other markers were fine and NT was in the normal range.

Al82 · 24/01/2020 20:36

I’m so sorry I can’t remember what my risk ratio was....
I think my age (36) also put me at a higher risk too. All of my other markers were fine.
It’s the whole not knowing that is so upsetting and worrying. I really feel for you going through this.

JulieC1981 · 27/01/2020 15:25

Blizy - how are you feeling today?
You mentioned you were seeing the consultant on the 3rd of feb, is that for your 20 week scan as they maybe able to see some soft markers for downs then if there are any x

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Paranoidkaty · 24/02/2020 11:21

Hi there.
I have such bad anxiety - I’ve called the screening midwife who doesn’t say much just that the results should reassure me. But I’m not reassured I’m so so worried.

I am 33, 34 at EDD first pregnancy conceived naturally.
My combined nhs screening gave 1:47 risk of Down’s syndrome. Which shocked me so much.

Hcg 4.6MoM
Papp-a 0.6MoM
NT 2mm

Then we went to the fetal medicine centre.
They also took blood for combined screen and performed detailed ultrasound to look at nasal bone tricuspid and DV.

Their adjusted risk with the additional soft marker came out 1:1338

I also had the harmony test which came back as low risk

Johnson10 · 24/02/2020 13:20

@Paranoidkaty - Awww please try to calm down a bit. I know it’s easier said then done though ...
The NHS screening tool is a load of shite. And that’s my honest view. It’s computer generated crap based on ‘averages’ but you are not the average woman. You are you! And we’re all different.
I had a similar situation in Dec. They rang me on the 23rd Dec saying i was 1 in 33 for DS. I can’t describe the sheer worry, upset, stress we felt. It was literally the Christmas from hell.
I did a lot of internet research & reading in to it while waiting on my harmony test results. They NHS combined screening puts a lot of woman through a lot of stress.

All of the tests you’ve had indicates everything is ok. I was ill before my 20w scan - baby boy is absolutely perfect! So please try not to worry. X

jmm499 · 24/02/2020 15:13

@Paranoidkaty Sending big hugs ❤️ The anxiety is so traumatic. I can relate to the ptsd element very much and have MMCs in the past. The NHS screening system takes some potential indications and comes up with risk factors that most of the time seem to cause more harm than good. I know many who decline it on this basis alone as they’ve seen friends go through the turmoil for no reason. The NIPT will look at DNA through the blood rather than suggested indicators (e.g hcg, age). That is definitely more accurate.

I second what @johnson10 has said (hugs to you too as I went through exactly the same over Christmas. It was so traumatic 💔)

I would say you should be reassured. But when you’re living it, what others feel doesn’t really come in to it! How about having some counselling to talk things through and see if you can find peace with the information you have? Sending love xxx

Liveforholidays · 24/02/2020 18:02

@Paranoidkaty I had a 1 in 13 chance of having a child with down syndrome via the NHS screening test. I was reassured by the sonographer that my age (40 at EDD) and weird bloods (but not massively abnormal) gave me that ridiculously high risk result. They didn't push me to have an amnio as the NT was within normal range.. We opted for the NIPT test which came back as 'highly unlikely'. I felt completely reassured, got through a 20 week scan, got through the uterine doppler scan (for my slightly low papp a) and then met with a consultant who unhelpfully at 24 weeks pregnant made a very flippant comment about the nipt test still being a screener, albeit a very good one. That one comment, said in passing sent me into three weeks of anxiety, to the point at which at times I felt like I couldn't breathe and desperately wishing I'd had the amnio. I then rang ARC, who were amazing!! They completely reassured me that I'd made the right choice for me at the time. If you haven't spoken to them, please do. I rang them, cried down the phone, then instantly felt better. Don't get me wrong, I am incredibly nervous still, but I think I would be anyway....i had a hideous birth with my son which is why I waited 7 years to do it again!! I chose not to do the amnio, the results from further screening have come back 'highly unlikely' and scans have come back clear. We will never know for certain until the birth but I don't think an amnio would tell us everything anyway. Hoping that you can get some reassurance soon....please do ring Arc. They will help xx

S1986york · 07/05/2020 17:30

Hi

I am 34 years old and am 13+5 days with my first child. I had my combined NT test on the 1/5/20 and got the call from MW on the 5/5/20 with the devastating news that I was high risk for trisomy 21,I had a 1:79 chance of this. The MW said that the nt was well within the normal range but by Bhcg was elevated, I didn’t ask for numbers as I felt it would worry me further. The news totally floored me, I had to go home from work and haven’t been back as can’t face people whom I have already told them I am expecting. I went from totally happy to deeply depressed.

I have decided to go for the harmony test which is tomorrow and have also booked in for the amniocentesis when I’m 15 weeks.

The waiting is agony- and I am so thankful for forums like this, it has been a great support hearing all of your experiences, thank you.

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