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Pregnancy

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Original poster

Downs Syndrome Risk Factor

40 replies

Bazoo23 · 01/02/2017 17:25

Hi, I don't know if I'm being silly but need some advice.
Got my combined screening results today and my risk for down syndrome is 1:860. Which sounds good but I'm only just 26 so was expecting more like the 1:25000 my friends etc have got. The midwife said it is high for my age which worried me even more. I'm just panicking and need some advice please.

OP posts:

sleepyhead · 01/02/2017 17:27

It's exactly what it is. Comparing to others your age doesn't give it any extra significance. This is a very low risk result

PotteringAlong · 01/02/2017 17:29

And also, it's just that. A risk. My best friend got 1:20000. She was that one in 200000 and her son was born with Down syndrome. If you want to know for definite you need different tests.

Serafinaaa · 01/02/2017 17:36

Risk based on your age alone is 1:1300 so it's not much different. My risk was similar to yours and my daughter does not have Downs but a Harmony test or similar could put your mind at rest?

NeverAShadowOfDoubt · 01/02/2017 17:40

I had a risk of 1:14 for one of my non-id twins, due to an increased NT measurement....he's now 4 weeks old and does not have Down Syndrome or any other syndrome. It's just a statistic. At the end of the day, its not diagnostic and really, without diagnostic tests, it means diddly squat!

NeverAShadowOfDoubt · 01/02/2017 17:40

Lostmyemailaddress · 01/02/2017 17:42

I've had a high one mine was in double figures so I know how worrying it is.

Did the midwife talk through the next steps with you and did you see a consultant. After I got my results by phone call I was booked into see the midwife again and saw the consultant afterwards they explained what the results meant for me and the baby and what the next steps was. I found it was at this appointment things where explained in better terms for me to understand.

Original poster

Bazoo23 · 01/02/2017 17:48

The midwife said I wouldn't need to see a consultant or have any other action taken as I am considered low risk. She passed me onto the screening coordinator as I was worried and she said to look at is as a 0.1% chance which sounds tiny.
The reason I'm so worried about this is my mum is a foster carer for children with special needs so I have first hand experience. My little brother has SLD and is amazing and a joy but such hard work too. Everything is a fight from wheelchairs to respite care and it's taken a toll on my parents. I have a DD who is 4 to think about too.
The midwife did say I could request the amnio but she strongly recommends not too with such low odds and I don't think I could knowing the risks.
Sorry for rambling.

OP posts:

neweymcnewname · 01/02/2017 17:54

Although it's higher risk than you expected, it is still quite low. I had a risk of 1in 195, and thought about how, if those odds were given on a sporting event, you wouldn't think it at all likely that you'd win, if you bet on it! My DC did not have downs (but it may also be worth reading up on what that would mean, as modern health care and education mean that people with Downs can expect happy, fulfilling lives).
I don't mean to trivialise the worry at all, but it helps to get it into perspective just how likely that event is.

Slightlyperturbedowlagain · 01/02/2017 17:57

There is a blood test now for foetal DNA you can have instead of an amnio, I think it's still being trialled but has given very good results and I believe NICE are looking at it. My sister paid for it to be done privately (due to age) as it wasn't available on the NHS at the time- this was about 18 months ago and it was about £90 I think.

AllTheLight · 01/02/2017 17:57

My risk was 1 in 250. This was also classified as low risk (I can't remember the cut off point - maybe 1 in 200?) but was not low risk enough for me to feel comfortable, so I had an amnio (which showed not Downs). None of us can tell you what to do though. Hope all works out ok.

Slightlyperturbedowlagain · 01/02/2017 17:59

www.rapid.nhs.uk/guides-to-nipd-nipt/nipt-for-down-syndrome/

Some information on it

neweymcnewname · 01/02/2017 18:00

If you consider amnio, you need to consider the odds of losing the baby due to that procedure. They may have improved, but they certainly used to be much higher than your Downs risk. It's not a nice thought, but that could mean that you have the amnio and it triggers miscarriage, then you find out the baby did not have a genetic condition.

savagehk · 01/02/2017 18:07

Bazoo, that's still 'low risk'. Our NHS trust don't actually give you the statistic, presumably to stop people worrying, they only tell you 'low' or 'high' risk.

NeverAShadowOfDoubt · 01/02/2017 18:14

I had a non invasive pre natal test done at 13 weeks, it was the Iona test which analyses foetal DNA and it reduced the risk ratio to less than 1:1,000,000. That gave me the reassurance I needed. Mine was done via Fetal Medicine on the NHS as part of a twin study but I think generally they are done privately. We were prepared to fork out for it as we needed to know what condition if any we were likely to be dealing with. I did however have a late amnio at 29 weeks for other reasons which again confirmed baby did not have DS.

Original poster

Bazoo23 · 01/02/2017 19:11

If you were in my position would you feel further testing was necessary? General question to anyone...Not amnio but paying privately, would you feel my odds warranted that?

OP posts:

StarSpotter · 01/02/2017 19:15

Statistics don't matter if you're going to worry yourself stupid. I paid for the Harmony test before my 12-week scan as I'm a worrier. I'm glad I did - all was fine but the money was worth it to me.

ShowOfHands · 01/02/2017 19:19

My risk with DS was 1:152. This is low risk. I never gave it a 2nd thought.

Grannyben · 01/02/2017 19:27

Hi bazoo, Im a grandma and was just browsing mumsnet when I saw your post. I was 25 when I had my eldest daughter. At that time my risk of downs should have been 1 in 2800. My blood test came back 1 in 27. I was devastated but chose not to have an amniocentesis as termination wasn't an option I could personally consider. My daughter is now 26 and a primary school teacher. These figures are not the be all and end all. Get advice from your GP, midwife, health visitor

Anatidae · 01/02/2017 19:32

The stats say you're low risk.
But, if you're going to worry for the rest of your pregnancy then get a nipt done.
I'm a geneticist by training so when I got pregnant we paid privately (not in the uk) for a nipt- illogical because I was low risk bit just my anxiety mixed with my professional background. You could have argued logical and stats with me all day and I'd still have done it. It was an emotional decision not a logical one.

Yes you're low risk
Have a nipt anyway for your own peace of mind - pregnancy is hard enough without extra worry!

savagehk · 01/02/2017 19:52

No, your odds don't warrant that. But as others have said, if you're going to worry about it anyway, it might be worth getting done.

Original poster

Bazoo23 · 01/02/2017 20:46

Thanks all, been speaking to my partner and he doesn't feel the odds warrant further tests. He is a glass half full person, I'm a complete worrier.
This is my last baby so I just want to enjoy every minute of my pregnancy. Opted not to have the tests for my first baby and never gave it a second thought, sort of wish I'd done the same this time.

OP posts:

MrsNuckyThompson · 01/02/2017 20:59

Could you pay for the Harmony Test? It'll tell you 100% whether or not you're affected?

If you can't just think of walking into a room with 865 babies, just one of whom has downs. Would you then be concerned that yours is the one?

Original poster

Bazoo23 · 01/02/2017 21:08

Have looked into Harmony, but literally nowhere local to me offers it, so would mean traveling quite far out. Partner doesn't think the risk warrants it, I'm not so sure.

My worry is just that walking into the appointment my risk was 1:1300 , my scan or bloods have obviously shown something to dramatically heighten my risk and that's what's bothering me.

OP posts:

dottydee3 · 01/02/2017 21:16

Miscarriage after amnio is 1% so your baby is far more likely to die from having the test than having DS. I would consider paying privately for harmony but only if you would terminate for DS. Otherwise there's no point worrying. IMO
Hope that doesn't sound to blunt

lljkk · 01/02/2017 21:16

The explanation is probably quite technical. Also remember that no one risk factor is so important by itself, that's why it's a combined test.

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