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Pregnancy

Talk about every stage of pregnancy, from early symptoms to preparing for birth.

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Original poster

Downs Screening Results, please help!

19 replies

Amy230 · 30/12/2019 08:26

Hello all :)
I received my results back a few days ago, says the chance of Down’s syndrome is 1 in 358.
I’m only 25 and read that my statistics should be around 1 in 1200 or more.
I know I’m still low risk, I just feel so worried that mine is so high for my age :(
Has anyone else been in a similar position? Would you get further tests done?

OP posts:

Besidesthepoint · 30/12/2019 09:35

If it would be a reason for you to terminate then yes, get more tests done. If you want to keep it regardless then don't do testing that might cause a miscarriage.

HayleyD84 · 30/12/2019 11:13

Hi OP,
I can't remember the exact numbers but my Son came back high risk, I was offered an amniocentesis to see for sure.
There was a small risk of miscarriage if I went ahead, to me I wouldn't abort if it came back positive so I decided the test wasn't worth the risk. My son was born absolutely fine.

but that was 5 years ago and since then there's a new test that some hospitals offer, it's a blood test that's sent to America, it's very expensive so only some hospitals offer it, mine does. (Although it didn't 5 years ago) but it's none invasive and low risk, might be worth asking if your hospital does this.

It all depends what you would do, would you consider aborting the baby if the test was positive? If so then I'd go for a test, but to me I'd love them anyway.
But if my second pregnancy now had of come back high risk I'd have had the blood test done as it's none invasive just so I could have been prepared.

Good luck xxxx

Goldenmother · 30/12/2019 12:56

Sorry you've had such a shock I got my results back just before Christmas mine was 1 out of 113 I'm older and over weight so they are a factor but I was sent to have the harmony test where they do a in-depth scan looking for red flags then they take some blood and they test the baby DNA i got my results back in 4 days all low risk, have you been offered this test I know some people have said it like a post code lottery and not all NHS have this but I was given this by the NHS and once you have that done it will put your mind at ease as it 99.8% accurate

OlivejuiceU2 · 30/12/2019 12:59

My niece was 1 in 16 and she is absolutely fine. Try not to worry.

Essexgirlupnorth · 30/12/2019 13:09

That is still a low risk and they wouldn't do a amniocentesis on the NHS for that risk cut of is 1 in 150.
Speak to the screening midwife at your hospital if you are still worried.

LividLaughLove · 30/12/2019 13:32

Pay for private NIPT testing.

About £400 and will tell you based on a non-invasive blood test.

OxfordCat · 30/12/2019 13:40

You can pay for the Harmony test which offers a far more detailed and accurate result (only a blood test, nothing invasive). I would do that to give yourself peace of mind.

Goldenmother · 30/12/2019 14:38

But also check if you can get it on NHS like I said in my above post I was given it on the NHS

Original poster

Amy230 · 30/12/2019 17:19

@HayleyD84 I wouldn’t abort no, it’s just for peace of mind really!
As a percentage, my risk is 0.28% which is tiny tiny, I’m just a huge worrier!
I could have a private test but it’s £400, not ideal for me, I’ll see how I feel in a few days lol x
Thanks for your reply!

OP posts:

Original poster

Amy230 · 30/12/2019 17:21

@Goldenmother thank you, I’ll check with my midwife if it would be offered on the NHS before I make a decision.
Not sure £400 is a price I’d be willing to pay if I’m ‘low risk’ I guess it’s just for peace of mind x

OP posts:

Jojo19834 · 30/12/2019 17:24

That’s very interesting re NIPT on NHS, was planning on having this as I am likely to be high risk just based on age and weight (if what a previous poster says is true). Which trusts were those in that had it on NHS?

Chefwifelife · 30/12/2019 17:38

Hey Op. I was slightly older than you with my first at 31 but my score was 1 in 185 (anything below 150 is considered higher risk). You can contact the screening result team to ask what raised your score. I think the scoring is done on age, para protein and nucheal fold. I went on to have a harmony test as we needed to know the sex anyway for a blood disorder I carry. My results were completely normal. I was told my para protein level was low and that’s what skewed my overall score. I had a friend who was 1 in 35 and had an amnio and baby was unaffected. Good luck with whatever you decide to do.

Goldenmother · 30/12/2019 18:33

@Jojo19834 I'm currently under the Whittington hospital in Islington London I was sent the UCLH hospital for my test

DappledThings · 30/12/2019 20:28

Which trusts were those in that had it on NHS?

King's College Hospital (includes the PRUH) offers it for free for anyone at a risk of 1:500 or higher so I had Harmony twice on them.

champagneandfromage50 · 30/12/2019 20:33

Kings offer harmony test and all other invasive tests on NHS. I had results of 1:32, 1:4 for my two boys. However I was a lot older than you whereas when I was your age my risk was 1:110000. So I would get a test just to reassure yourself or just to know . I did with my two DS who ended up being fine

MontanaSwing · 30/12/2019 20:35

I got told I was 1 in 21 risk. I was devastated. I didn’t want to risk the amnio test so opted for the private test for peace of mind. It was £300. I had to wait about 2 weeks for the results and it was the long 2 weeks of my life. The whole time I didn’t know what I would do. Anyway the results came back it was 1 in a million chance. I was over the moon!

My little boy is now 22 months. I’d recommend you get the private test if you want peace of mind.

Betterversionofme · 30/12/2019 20:42

My doctor in a different country suggested to me to think what I would do depending on results (we were talking about all sorts of screenings) AND what they (doctors could do). If answer is that I wouldn't have an abortion and there is nothing doctors can do during pregnancy, they I don't and maybe shouldn't have screening as all of them are invasive to smaller or bigger degree.

Engard · 31/12/2019 18:20

My friend had 1:150 at 22 but wasn't given any additional testing and baby doesn't have Down's syndrome. Midwives would be on it if they saw a red light.

Robs20 · 31/12/2019 18:29

I had 1:28 risk of downs and paid for the nipt. At 1:358 you are nowhere near the high risk bracket (1:150). You could pay for the nipt but I wouldn’t in your situation. Do you know what is making your risk factor higher than normal for your age? (NT, hcg or papp a)?

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